Faces of the Family House
Get a first hand look at the families who have stayed at the Family House. Read their stories and get to know the people we are directly serving.
Ashley and Bobby Adams
“We are indescribably grateful for the Family House and how positively it has affected the outcome of our situation. Without the Family House, it would have been very difficult for Ash to be with me every single day, both financially and logistically. Without her unyielding emotional support and care, I wouldn’t be as well off as I am today. Guaranteed. And without the support and the positive environment of the Family House, Ash wouldn’t have been as available and emotionally present for me. The Family House truly is a ‘home away from home’!” – Bobby Adams
On March 20, 2015, Bobby and Ashley Adams of Bordentown, NJ were newly married and Bobby had just received his precious gift of life, a double lung transplant. Yet there were many events that led to these miraculous events.
Bobby Adams grew up with the privilege of enjoying a healthy, care-free lifestyle. He had always enjoyed doing things outdoors, such as camping, hiking, snowboarding, and mountain biking. In January of 2015, that came to an abrupt and unexpected halt. Bobby started feeling very sick and, with symptoms only worsening, Ashley took him to the local emergency room. Neither of them had any idea that Bobby would be hospitalized for the next three and a half months – the majority of which were in critical condition.
When Bobby was first admitted to the hospital, he was quickly intubated and placed on a ventilator for life support. His lungs were failing, fast. The cause of his lung failure was unexpected.
After being diagnosed with Acute Interstitial Pneumonia and ARDS, Bobby was placed on ECMO, an additional type of life support, which oxygenates the blood. He was then placed into a drug-induced coma while doctors worked around the clock to try to save his life. While in this coma, doctors broke the news to Ashley that Bobby’s only chance at survival would be to receive a double lung transplant.
Ashley felt like she was living a nightmare. Nothing felt real. Within a few days of being informed about the need for Bobby to receive a transplant, a social worker at the hospital told her about Gift of Life Family House. She didn’t know much about the Family House at the time, but she knew she was grateful to not have to pay thousands of dollars for a hotel room in the city with her mom, or sleep on a friend’s couch anymore. The Family House was a very affordable alternative. What she quickly learned, however, is that besides not having to worry about the expense of lodging, the Family House also provided her with hot meals, cooked by people who really wanted to help, rides to and from the hospital, and the opportunity to meet some amazing people who understood the frightening reality of what Ashley was dealing with; including House guests, volunteers, and staff.
The 2015 Gift of Life Family House President’s Reception took place the same day that Bobby was listed for a lung transplant. At that time, Ashley and her mom were in attendance at the reception as Family House guests. For this year’s President’s Reception – honoring the Founders’ Circle and 2015 Family Circle members – Ashley and Bobby were invited back to the house – not only to share their incredible story with event attendees, but also to celebrate their one year wedding anniversary and Bobby’s first ‘Transplant-a-versary’. They were honored to be there with some of the most generous supporters of the Family House and to share the miraculous conclusion of their incredible transplant journey.
Just two days after being listed for a transplant, Ashley and Bobby decided to get married right then and there, bedside in the hospital ICU. Moments before their wedding ceremony, doctors came in to the room to give them the incredible news: they had a prospective donor for Bobby! After everything that had happened in the months leading up to this point, for two such miraculous things to happen in one day seemed to Ashley a sign that everything would be okay after all.
Ashley and Bobby couldn’t have been happier on that particular day in March of 2015. Within a few days, Bobby had a new bride, new lungs, a new life. Bobby is now back to work, grateful for a little more normalcy and enjoying many of the things he still loves to do. All the while, the newlyweds are incredibly grateful for Bobby’s donor and his family for making the selfless decision to choose organ donation, which allowed for Bobby’s life-saving transplant. And the couple is also indescribably grateful for the Family House and how it positively affected the outcome of their situation – and which is only made possible by all of its wonderful supporters, especially its generous Founders’ and Family Circle members.
The Schuck Family
Helping Families Heal
Joan and Bob Shuck could not possibly have prepared themselves for what happened to their son, Daniel, a high school senior, athlete and honor student. In May, just weeks before graduation, Daniel developed a viral infection that caused his heart valves to fail and severely damaged his heart muscle.
Daniel was flown to Philadelphia for treatment from the hospital near their home in Bethlehem, Pa. When he was deemed strong enough, he was placed at the top of the organ transplant waitlist because of his urgent need. Daniel received his gift of life, a heart transplant, on August 9th.
During Daniel’s hospitalization, Joan and Bob stayed at the Family House. The affordability was important to the Shucks, who were with us for over four months. “It helped tremendously,” says Joan. When Daniel was stable, the Shucks would eat dinner at the Family House and then return to the hospital. They are very thankful for the Home Cook Heroes volunteers who prepared and served the meals. As it turned out, staff from the hospital where Daniel was being treated made dinner one night.
“We didn’t feel like we were a burden on anybody, we felt welcomed – like we were family. It’s a place you can relax, as much as you can relax with what’s on your mind.” explains Bob.
Knowing that his parents’ needs were being met put Daniel’s mind at ease and helped in his care. “They were able to be with me and focus on what I needed.” Later on when he stayed at the Family House himself, he says it was a great experience. “I absolutely loved it at the Family House. Everybody greeted me like I had been there for months.”
Now Daniel is working to build up his strength so that next year he can attend the University of Scranton, which granted him a deferment due to his health crisis. He’ll be entering a five-year master’s degree program in Occupational Therapy. “I enjoy knowing that someday I can help people like me get back to doing all the things that they like to do.”
Terri and Darryl Price
At the Family House I Wasn't Alone
Darryl Price’s wife, Terri, spent 42 nights at the Family House this past summer while he recovered from a life-saving double lung transplant.
Connecting with other patients’ wives staying at the Family House aided Terri’s own well-being as a caregiver, she says. “It helped me realize I wasn’t alone. Even though we were talking about our husbands and their illnesses, we were also talking about how we had to take care of ourselves. We were encouraging and supporting each other.”
An all-around athlete and avid tennis player, Darryl began feeling ill about three years ago. It took a while for doctors to pinpoint what was wrong, but when they did, it was serious — Pulmonary Fibrosis, a disease that causes scar tissue to build up inside the lungs, making it hard to breathe. Sometimes, as it was in Darryl’s case, there is no known cause.
As his health deteriorated over time, it became clear that Darryl needed a lung transplant — and soon. Terri and Darryl endured five dry runs from their North Jersey home to transplant centers in New York City and Philadelphia where he was dually listed. Each time, donor lungs were available, but ultimately not accepted by the surgeons.
Finally, on June 24th, on their sixth try, and after many hours of waiting at the hospital in Philadelphia, they got the good news that the donor lungs were suitable and Darryl would receive his gift of life. He continues to get stronger each day and hopes to return to work soon. He has already gotten back on the tennis court.
Staying at the Family House helped Terri focus on Darryl’s needs because her needs were being met. “It took a load off my mind. I didn’t have to think about the day to day: where am I going to eat, how am I going to get laundry done, and all that other routine stuff. It gave me peace of mind.”
Darryl believes that helping other patients and family caregivers who need to be uplifted or reassured has helped him in his own recovery. The Family House, he says, is a unique place that fosters this kind of person to person support.
Explains Darryl, “At the Family House, you can ask a person, ‘Are you alone?’ which would be an odd question to ask a total stranger in any other setting. But in the context of the Family House, not only can you ask that question, but you can expect a long, meaningful conversation to ensue that both parties can benefit from.”
The strength of being in a community at the Family House is fostered by the daily interactions with fellow transplant patients and families, volunteers — many of whom are transplant or donor families — and the staff.
“When I stay at the Family House, I can speak in a kind of shorthand. It’s much easier to deal with the issues that come up. For example, if I ask for a refrigerator in my room, the staff knows that it’s likely that I’m taking medication that needs to be refrigerated. I don’t have to explain why or give justifications, they just understand it.”
Mark and Dannette Forney
Mark Forney always led a healthy, active and face-paced lifestyle. As a former marine and correctional officer, there was nothing that could stop him from overcoming any obstacle that was in his way – even when he was told he only had 18 months to live. With his wife Danette by his side, Mark never gave up, and proved that with positivity and resilience, miracles can happen if you believe in them.
Mark and Danette married in September of 2014. Danette knew that she, too, would also face obstacles because of Mark’s condition. Just two years prior, Mark came down with a severe case of pneumonia and struggled to breathe on his own. Doctors diagnosed him with idiopathic pulmonary fibrosis (IPF), a disease that has no known origin and causes tissue deep in the lungs to become scarred over time, which then leads to the inability of the lungs to move oxygen properly into the bloodstream. Danette has been with Mark every step of the way since then, explaining that, “He’s the king of my castle – I’ve got the best thing ever here, and I’m here to take care of him for whatever he needs.”
The couple began staying at Family House shortly after Mark’s diagnosis. Since October of 2013, they have stayed a total of 259 nights. Driving back and forth two hours from the duo’s hometown of Marysville, Pennsylvania to Philadelphia was too much of a burden to bear during the beginning stages of Mark’s transplant journey. The Family House provided comfort, a network of friends and convenient proximity to doctors at near-by hospitals. “It’s really a ‘home away from home’. It’s a nice atmosphere, and the staff is great. The Family House is like home,” described Danette, “in one word – this place is awesome.” In addition to the convenient location and support, the Forney’s are also extremely grateful for the volunteer Home Cook Hero groups that prepare and serve meals for guests. Sharing a home-cooked meal with other guests brought them together with families going through similar experiences – many of whom they still keep in touch with today.
Mark spent months trying to combat the disease by going to daily respiratory therapy sessions – pushing past difficulty breathing and tiredness to do whatever he could to help his lungs function. But in July of 2014, doctors told Mark he only had 18 months to live, unless he received a life-saving transplant. Even after the devastating news, Mark wouldn’t give up, saying that, “I had to stay positive. I had to keep going.” Finally, on May 1, 2015 – just shy of being on the waiting list for a year – Mark received his “gift of life” – a double-lung transplant. Thanks to the selfless act of a generous organ donor, Mark was given a second chance at life.
Mark is doing much better since his transplant, and even completed a 5k this past September – accomplishing a total of 11,107 steps – to be exact! He and Danette still frequent the Family House for post-transplant related care. When asked how he describes his journey so far and what the Family House means to him Mark said, “You get discouraged, but you can’t give up. You get the gift of life – I can’t put it into words. I’m so grateful for this place. I’m thankful, lucky, happy – I’ve been so blessed.”
MaryAnn and Joe Finlay
A New Definition of “High School Sweetheart”
“I look forward to that time when I can come back here for dinner and sit with my new friends that I have made. I don’t know how I would have made it through these past three months without this place…“– MaryAnn Finlay
Their love story started in high school art history class and continued 30 years later when MaryAnn discovered Joe needed a lung transplant to survive.
After dating on and off in high school, Joe Finlay was called away for his work in the United States Army. Life intervened and sent MaryAnn and Joe in different directions. Besides the occasional phone call, they lead very separate lives with their individual work and family.
Fast forward 30 years, MaryAnn, living in New Jersey, had a dream where she saw Joe with an oxygen hose in his nose. She decided to call Joe, who was living in Virginia at the time, only to find that Joe really was sick. He had been diagnosed with Pulmonary Fibrosis, an incurable disease.
“I told Mary that she was not going to have much of a future with me—the doctors told me I only had two years to live,” said Joe.
After talking daily, they decided together, “No more missed chances, and no more regrets. Life is too short. Nobody knows what is going to happen today or even tomorrow.”
They were married that same year. “We said no more wasting time. We are soul mates.”
After the couple married, Joe‘s condition worsened and in 2013 he was diagnosed with a bacterial pneumonia. He also had developed bladder cancer—meaning he had to wait an additional two years before being placed on the waiting list for a transplant. And as those two years progressed, the worse his condition became.
The couple eventually traveled to Philadelphia for preliminary transplant testing. They were thankful to be able to stay at Gift of Life Family House during those long two weeks of testing –and MaryAnn especially appreciated that she could be by her husband’s side to care for all his needs. “He was very bad at that point where every five minutes I was running to him with an emergency breathing bag.” MaryAnn explains.
Acting as the permanent caregiver to her husband, MaryAnn says, “It is important to know that the pain and suffering that the caregiver goes through is just as bad as the pain and suffering that the patient goes through. Even though we are not going through the physical aspect, it’s the emotional aspect—that when I see this man who was so strong and could do everything, is now deteriorated to where he cannot even pull the covers over his shoulders. I would just cry myself to sleep.”
After Joe and MaryAnn returned home from Philadelphia for that initial testing, Joe’s conditioned declined drastically. MaryAnn rushed Joe to their local hospital and quickly learned that, other than hospice, there was nothing that they could do. So MaryAnn drove Joe back to the hospital in Philadelphia, where he was admitted immediately. He would not leave the hospital until he had his transplant.
Joe received his gift of life, a lung transplant, just two weeks later on March 4th 2016. MaryAnn was able to be by his side at the hospital every single day, thanks to her “home away from home” at the Family House.
“It is a hard journey for all transplant patients—it’s painful and it’s hard. And if I can stress enough—they must have a support system. I was there at the hospital every single day. My focus was on Joe and getting him through this hard time,” explains MaryAnn.
Although Joe’s memory is a bit cloudy from his post-transplant complications, he remembers MaryAnn and her smiling face every day while he was in the hospital. Joe says “She came every day. I told her, keep bringing that beautiful smile and everything will be alright. And she did.” He remained at the hospital for two months following his transplant.
During those long months while Joe was hospitalized, MaryAnn found comfort at Gift of Life Family House. “I don’t know how I would have made it through without that place. I would take the shuttle every morning, be there from 8 o’clock to 4 o’clock at night, come back and eat my dinner.”
MaryAnn recounts how when she first arrived she would sit alone in the dining room decompressing from a long day at the hospital. However, as the weeks turned to months, she started making friends with all her fellow guests. “We would all join together and tell each other stories of what was happening with our family members. Sometimes we would cry together. I met wonderful friends here! I started to look forward to that time when I could come here at dinner and sit with my new friends that I have made here. I wouldn’t want to stay anywhere else.”
In May of 2016, MaryAnn and Joe Finlay were finally able to return home to New Jersey. They say this experience has made them even stronger – as individuals, and as a couple.
“In a really stressful and hard time for our family, it was a sense of relief knowing that my father had a great place to stay while recovering. I felt that he was always under the best care in a really amazing place.” – Conor McGrath, pictured below with father, Luke, lung transplant recipient and current Family House guest
Luke McGrath worked as a Director of Special Education for 35 years in Somerville, NJ. He planned on retiring in the summer of 2014 to start a new journey of crossing off items on his bucket list with his wife, Sarah. Instead of traveling the world, however, Luke found himself traveling to Philadelphia after being diagnosed quite unexpectedly with nonspecific interstitial pneumonitis in 2013 – a condition that would eventually lead to Luke receiving not one, but two life-saving lung transplants.
After multiple visits with doctors in Philadelphia, Luke was put on the waiting list in September of 2014 to receive a lung transplant. After only eight days on the wait list, Luke miraculously received the call for his gift of life.
Meanwhile, his wife, Sarah, stayed very nearby at Gift of Life Family House to support Luke through his transplant journey. “It took such a burden off that my wife had a place to stay,” explains Luke, who later joined Sarah at the Family House for his recovery.
Luke seemed to being doing quite well after his first lung transplant. Then, in October of 2015, Luke began to experience rejection with the organ he received and had to be hospitalized once more. In early March 2016, the doctors told Luke that he would need to be re-listed for transplant due to the severity of rejection.
On May 5th 2016, Luke received his second gift of life, this time, a right lung transplant.
Throughout the ups and downs of their transplant journey, the McGrath family has found solace in the loving care that the Family House provides. Sarah was well cared for while Luke spent many weeks in the hospital – and then he was able to have a “home away from home” to return to for his lengthy recovery. Not only that, but also their sons had the opportunity to visit their parents here in Philadelphia as they, too, had a welcoming place to stay.
“When I visited, everyone working there made me feel very welcomed and comfortable. I was able to spend some nice time with my father during his recovery. The meals that were cooked for us at the Family House made it really feel like home and offered such a sense of normalcy that I’m so grateful for.” – Conor McGrath
Now, with his recovery going quite well, Luke is back to planning his bucket list adventures, beginning with a trip to the Pacific Coast. But first, he is happily spending time with his three sons, Conor, Kevin and Sean. He was especially grateful to be well enough to attend his middle son Kevin’s wedding this past weekend in June. “I wanted to be there for them and continue to be their father,” explains Luke.
Thanks to the power of organ donation, Luke can continue to be a loving father and husband, and will be able to spend time with his family this Father’s Day. And he very much looks forward to, finally, crossing some items off his bucket list.
Twins, Sofia and Stefani Atencio from northern New Jersey, are 11 years old and share a disease called Interstitial Lung Disease. While most children their age are running around and playing, Sofia and Stefani could barely function without having their oxygen.
Sofia’s illness began to progress quicker than Stefani’s and she was placed on the transplant list in 2014. After 15 months on the list, Sofia got ‘the call’ on Easter Sunday in 2016 and received her double lung transplant that same day. She jokes now that the Easter bunny left her new lungs in her Easter basket.
After only a few weeks, Sofia was discharged from the hospital and her recovery continued at the Family House. Sofia was able to use the Family House exercise room to continue her physical therapy and rehabilitation, walking so much further on the treadmill than when she first arrived at the Family House. Now her mom, Elsy, smiles at how much more Sofia can do without her oxygen and that she can finally begin to act like kids are supposed to act at her age.
Shortly after Sofia and her mom checked into the Family House, sister Stefani needed to be hospitalized for issues related to her disease. While Sofia was at the Family House and Stefani was in the hospital, both Elsy and their dad, Walter, as well as other family members, took turns to be with the girls while at the same time trying to maintain their jobs and their bills at home. Thankfully, Stefani was hospitalized for less than a week and was then able to return home, while Sofia remained at the Family House with her mom.
Now both girls are back at home, trying to readjust to their everyday life while Sofia recovers from her gift of life and Stefani continues to wait for hers.
Russell and Cindi Westendorf
“I think one of my biggest reliefs was finding the Family House, to be honest with you. That is when my heart felt better because I knew my wife was going to be okay.”– Russell Westendorf, lung transplant recipient.
It was 33 years ago when Cindi and Russell Westendorf met at the Hospital of the University of Pennsylvania (HUP), purely by coincidence. Now, happily married with 3 grown children, they found themselves back at the same hospital, but this time for Russell to receive a life-saving lung transplant.
Prior to Russell and Cindi meeting, Cindi was a graduate student in Philadelphia studying counseling and creative arts therapy. Russell had gotten into a very serious motorcycle accident and was transferred to HUP, a hospital close by where Cindi was studying, to receive bone grafts. He stayed there for many months during his recovery. Cindi’s family, who knew Russell’s family, recommended she stop by his hospital room for a visit as she was already in the area – and they have been together ever since.
After they got married, they settled in Colts Neck, NJ and had three sons. Russell worked as a stone and tile setter. A union man at heart, Russell loved his job, especially the fact that his hours allowed him to be home with his kids and his wife. However, it was very tough on his physical health and Russell developed a serious lung disease. Surrounded constantly by dust, insulation, and other hazardous materials, “it physically beat me up. Lung disease was part of what I did. It took some getting used to, but slowly my health got worse until suddenly I’m using 17 percent of my lung capacity, and started to have to use the oxygen.”
Because of his illness, Russell was listed for a lung transplant in 2014. All too familiar with caregiving and support, Cindi, an art and trauma therapist, has been right by his side throughout his entire transplant journey. Russell could not be more grateful for their partnership, “She is my rock and probably the most giving person I’ve ever met in my life.”
After two years on the transplant list, the couple was getting into bed one night about a week before Christmas when they received the call that donor lungs were available. They rushed to Philadelphia, over 70 miles from their home at 2:30 in the morning and, upon arrival, Russell went right into surgery. He awoke on December 19th with the gift of life – a new pair of working lungs – thanks to someone’s selfless decision to say yes to donation.
After the transplant surgery, Cindi was able to stay at Gift of Life Family House while her husband was in recovery. Russell said, “I think one of my biggest reliefs was finding the Family House, to be honest with you. That is when my heart felt better because I knew my wife was going to be okay.”
On Christmas morning, a few days after the surgery, the doctors moved Russell back into the ICU due to a complication. Cindi, who was staying at Family House, got a call from the hospital explaining the situation. “I got up, so startled. I didn’t even think about it being Christmas but I woke up, got dressed, got myself together and opened the door and there were all these gifts from the staff. It was really special; it’s just a little thing like that that made me feel like we were in the right place at the right time.”
Russell recovered from the complication and was released from the hospital a few weeks later. He was then transferred to the Family House to continue his recovery. After hearing so many wonderful things about the Family House from his wife, he had high expectations upon arriving: “When I got here, I was totally blown away. Everybody here is just wonderful, very supportive. The thoughtfulness that went into planning this place and the relief of having meals is unbelievable. And I love the fact that you can sit around and share experiences with other transplant patients.”
Though the couple remarked on many wonderful aspects of the Family House, Russell’s favorite, in particular, was the Home Cook Heroes program. This volunteer-based program invites people from all over the community to come to the House to prepare a home-cooked meal for Family House guests. Russell especially enjoyed the variety of nutritious meals, “It’s all been fabulous—the whole concept that people do this for us is so nice. It has really helped me open up my pallet and try different things that I normally wouldn’t,” said Russell. “I wouldn’t even eat salad at home and now I am trying new things, like guacamole. It’s given me a new lease on life – healthy eating is important for my recovery.”
Russell and Cindi are thrilled have a place where their sons can come for visits, a place where they can meet new families and volunteers and continue trying new foods. But above all, they are relieved to have a place where they can relax and work on getting Russell’s physical health back to normal. Russell says, now more than ever, they will both continue to live by their personal motto: “Be Positive—that’s my blood type.”
“It feels like our own house — it’s a safe place. We were able to be a family again while we waited for Gabe’s Transplant.”
Carmen and Cesar Sanchez brought Gabe to the ER 10 days after he was born for a cough that would not go away. All of his tests at birth were normal and the doctors were having trouble identifying the issue. Gabe began to lose weight and stopped eating. After several tests, medications and specialists doctors in Maryland decided to admit him on October 22, 2014. It took about 2 months before a diagnosis was found.
In December 2014 the doctors in Maryland found that Gabe had a genetic disorder called children's interstitial lung disease (chILD), with an ABCA3 deficiency. Medication management was unsuccessful and Gabe required to be placed in an Oscillatory Ventilator. The Sanchez family was referred to CHOP for lung transplant and on January 5th 2015, Super Gabe was transferred to CHOP with numerous medical teams managing his care. Carmen and Cesar remember there first time visiting CHOP to discuss Gabe’s care.
“We’re from the country in MD, so going to Philadelphia was very scary - not knowing anyone or where to stay. That first weekend we spent $160 a night on a hotel and $40 a night on parking alone. Not including the gas and tolls and the cost for food.” When Carmen and Cesar realized Gabe would be spending quite some time in Philadelphia they talked to the social worker about other lodging options.”
Super Gabe was listed for double lung transplant at CHOP on January 13, 2015. Carmen had to continue to work in Maryland to maintain the insurance, so Cesar became the primary caregiver, mainly utilizing the Family House. The Family House became his place and time to disconnect from the hospital and relax. He could sleep peacefully and have a home cooked meal. “It feels like our own house, it’s a safe place,” says Cesar. The Family House was a safe place for Carmen and our other two children to visit, Rose (17) and David (11). “We were able to be a family again while we waiting for Gabe’s Transplant.”
Super Gabe received his transplant on March 23, 2015, only about 8 months old. He remained in the hospital recovering until October 6, 2015 when he was discharged home, spending almost 1 full year hospitalized between MD and PA.
Thanks to his lung transplant, he is now a healthy little boy. He plays with his older brother David, who loves him very much. His favorite thing to do is run around, chew on everything, and watch Sprout! Now the family only has to come back to the Philadelphia area about once a month for follow-up, each time staying at the Family House. Carmen and Cesar are especially thankful for their donor and donor family and knows that none of this would be possible without them.
“It is a blessing. I love coming to the Family House, there is no place I’d rather be. I like coming here and I like everybody — when I walk through the doors it’s like, “oh I’m back!”
Keith Chalmers, from Wilkes Barre, PA, stayed at the Family House following his double-lung transplant.
Diagnosed with Chronic Obstructive Pulmonary Disease, he decided it was not his time to go. In February of 2015 he was listed for a lung transplant and just 1 month later, he received his gift of life at the end of March of 2015 on Palm Sunday. He stayed at the Family House during his recovery.
Josh and Claudia Fernandez
“When the doctors called and told us that we could go home to NJ, Josh and I were not sure that we wanted to leave the Family House because it was such a safe place for us to stay after his transplant surgery. They understand what we were going through. We call the Family House our second home.”
Claudia and Joshua Fernandez, (Chatham, NJ). Josh, received a double lung transplant this past May. He and his mother stayed at the Family House during his procedure and for his follow-up appointments.
The transplant journey can be a very trying time, and some families are forced to endure circumstances beyond anything they had imagined. In order to ease their journey, Gift of Life Family House strives to provide rays of hope and comfort during what may often be a very dark time.
Peter Mansaray and his family, of Camp Hill, PA, are frequent guests of the Family House. In his letter below, Peter shares details of his family’s transplant journey and how Gift of Life Family House has played an important role in their lives.
My wife and I left our family to move to the United States in the early ‘90s to escape the civil war in Sierra Leone. We witnessed horrible things: villages destroyed and people close to us murdered. I was sure that part of our lives was the worst we would ever go through.
We started over in the United States and my wife, Mary, and I had four beautiful children, Peter, Joseph, John and Beverly. Soon after our daughter, Beverly, was born in 2001, Mary was diagnosed with Cardiomyopathy. Although she was sick, we were able live a normal life. She and I both worked and our children went to school and loved playing soccer.
Over the years, however, Mary’s heart worsened and we were told she would need a heart transplant. She was officially placed on the transplant list in July of 2015. At this same time, my second child, Joseph, who is 16 and was (we thought) extremely healthy, became unexpectedly ill. I immediately took him to the ER near our home in Camp Hill, and he was quickly transferred to a children’s hospital in Philadelphia. Joseph was diagnosed with Cardiomyopathy – the same disease that my wife was diagnosed with.
Joseph was so sick, that there were times when I didn’t think he would make it. He spent about three months in the cardiac intensive care unit. I was with him every second, while Mary continued to work at home and care for our other three children. While hospitalized, Joseph received an LVAD and he was listed for a heart transplant, just like his mother.
When he was eventually discharged from the hospital, we were able to stay at Gift of Life Family House for his recovery.
A few weeks later in September of 2015, Mary transferred to a transplant center in Philadelphia so that she could be closer to our son, who was still in the hospital. After her evaluation, the doctors told us she was much sicker than we had realized and she was quickly admitted and listed again for a heart transplant. She received her heart transplant just a few days later. We were so thankful!
Mary remained in the intensive care unit for about four weeks post-transplant. Joseph, who was required to be with me 24 hours a day due to his LVAD, and I would spend many days at the hospital and nights at Gift of Life Family House. In order to keep my two youngest children’s lives as normal as possible, they stayed with neighbors in Camp Hill so that they could continue school. Our oldest son, Peter, is a student at Temple, so he was close enough to be able to visit. We would be a family again on weekends when we were all together in Mary’s ICU room.
I am very sad to say that Mary’s recovery was very rocky and she passed away on November 4th with me and her children by her side. While our story has been a sad one, we thank God for the Family House and people like you. I don’t know how my family or I could have gotten through the last three months without the Family House.
Since all this happened, we have had no income. But thanks to the Family House, we haven’t had to worry about the cost of staying overnight in Philadelphia, where to sleep or where to get food. The Family House has given us a place to stay, home-cooked meals and even provided us with gas cards to use to get back and forth from our home in Camp Hill. I also met a donor family at the Family House around the time of my wife’s transplant and this gave me the strength to continue.
Thank you to Gift of Life Donor Program for coordinating Mary’s transplant, which gave us one more month with her. Thank you for everything you do every day to help my son Joseph one day get his transplant.
And thank you, Gift of Life Family House, and all its supporters, for helping us through all of this – as I am not sure what we would have done without it.
"Thank you for everything you have done for the Family House it has been a great place for my family and I to stay."
Sarah, who lives in Maryland, is staying at the Family House because she received a heart transplant on her eighth birthday. She is now 17 years old!
“The Family House was not here when I was going through my transplant, but we have stayed here over 8 times since it opened for my transplant appointments. We live over an hour and a half away and being able to stay at the House makes our trips to Philadelphia so much easier for me and my mom, especially after we are in CHOP for 6 hours for appointments. Because someone said yes to organ donation I received the ultimate gift of life, a new heart, and I am forever grateful to my donor. Thank you!"
Dear Friends of the Family House,
My name is Kristen Hovinga. My husband, Brad, and I stayed at the Family House this summer with our youngest daughter, Claire, after she had a liver transplant. What an amazing place!
I can’t say enough about the wonderful staff, who always smile and listen, and the camaraderie among the transplant families we met. The Family House provided everything we needed — and more — during what were some of the most difficult weeks of our lives. We could not be more grateful.
Our transplant journey began when Claire was just nine weeks old. She was diagnosed with biliary atresia, a disease of the bile ducts that affects infants. For more than a year, we watched our baby girl get sicker and sicker. The disease made her bones brittle, causing at least 15 fractures. Most of the time, she was in a cast or a brace and in pain. She rarely smiled. She hardly spoke. She had difficulty moving around and mostly curled up in our laps. It was so hard watching her go through this. I still cry at the thought.
Today Claire is a different child. The liver transplant changed everything! Her bones are already healing nicely and she is no longer in pain. She smiles and laughs. She walks, dances to music, and loves coloring and playing with her big sisters, Katie, 3, and Lily, 4. We get really choked up watching her. It’s incredible to see. She also babbles, says ‘Mama’ and ‘Dada,’ and imitates the sounds of the farm animals in the stories we read to her. We never really heard her voice before. We are enjoying getting to know our daughter!
We are now looking forward to spending the holidays together. Last year, Claire was in the hospital more than she was home during the holiday season. We can’t wait to watch her open presents like a normal toddler. Because she is more immune suppressed the first year after transplant, we’ll celebrate at home with our immediate family.
We’ll continue to stay at the Family House when Claire has a long day of doctor visits in Philadelphia. There is such a tremendous feeling of support and comfort in every aspect of the services the Family House provides. We are so very thankful that the Family House exists and we want to make sure that other transplant families are helped the way we were.
I hope you will join Brad and me, and our family members and friends, in supporting the Adopt-A-Family Program by making your own charitable contribution today.
P.S. Thank you for helping families like mine and Happy Holidays!
Please consider supporting the Family House with a special year-end gift – your generosity is greatly appreciated. Click here to make a donation!
Felicia & Jose Padilla
“It is an understatement when we say the Family House is a life saver; a thank you will never express our gratitude.” – Felicia Padilla, recent Family House guest
Felicia and Jose Padilla are a young, active couple from Rockland County, New York who have been married for two years. Felicia says that, for as long as she’d known Jose, she had not known a life without dialysis. “When Jose and I first met, his kidney had just failed and he was back on dialysis. Even on our honeymoon, I spent hours apart from him as he had to go to dialysis treatments during our trip.”
As just a young child, Jose was diagnosed with Alport Syndrome, a rare genetic kidney disease that resulted in full renal failure by the age of just 16. At that time, Jose was put on dialysis and officially listed for a transplant in New York. “Luckily, Jose was blessed with a transplant from his mother, Ines, who was a perfect match,” explains Felicia, “His first transplant lasted almost 11 years before it stopped functioning.” At the age of 27, when his kidney began to fail yet again, Jose and Felicia were once again back on the transplant journey. But without a family member to serve as a living donor, and because of Jose’s high percentage of antibodies, the wait time for a kidney in New York would have been approximately 8 to 11 years. At this point, Felicia and Jose began to explore other options.
“In order to give my husband a better chance at finding a match, we began the arduous testing process to be listed at transplant centers in other states,” describes Felicia, “After five calls for potential donors that did not work out, we received a sixth call for a kidney on the 28th of June and rushed to Philadelphia in the middle of the night. Thankfully, Jose had finally found a match.”
A match was found, but Philadelphia was still three hours away, and the Padillas did not want to have to commute six hours back and forth to the hospital for his treatment and follow-up care. That’s when Jose’s transplant coordinator suggested they consider Gift of Life Family House, where they stayed for four weeks over the summer while Jose recovered from his long-awaited and life-saving kidney transplant. “I cannot imagine what recovery would have been like without this safe haven,” says Felicia of the Family House. “We could have never afforded a hotel each night. The Family House was an affordable place where we could comfortably stay and it was only about 20 minutes from Jose’s hospital, with free transportation provided through the Family House shuttle service.”
The Padillas found comfort at the Family House and also greatly enjoyed the Home Cook Hero meals provided by volunteers each day. As Felicia states, these home-cooked meals were “always delicious and took away so much of the stress of recovery after being in the hospital all day.” Felicia and Jose also took full advantage of the free laundry services and gym available to them, allowing them to feel, in Felicia’s words, “right at home.” And of course, the comfort of connecting with other individuals on the transplant journey – offering advice and sharing experiences – helped them immensely.
“Another one of our favorite things about Gift of Life Family House,” Felicia says, “were the events they planned for the families. There was a Sunday where any guest staying at the Family House could receive a free haircut from a volunteer stylist in the area, a night where we tie-dyed shirts, and even a carnival night. It was amazing to see all the wonderful things Gift of Life Family House provides for their guests.”
Felicia sums up her experience saying, “Gift of Life Family House was a beautiful and comfortable place to rest our head at night—it was beyond our expectations. It offered us peace of mind and a place where we could ‘take it easy’ and focus solely on recovery. We were able to forget about the other stresses of life and simply live in the moment. We felt extremely safe there.”
Felicia and Jose say they now look forward to their second chance at a “normal” life together: they love traveling as much as possible, being outdoors and active and spending time with their dog, Delia. Now, thanks to Jose’s transplant and successful recovery at the Family House, this is all possible. As Felicia notes, “it is an understatement when we say the Family House is a life saver; a thank you will never express our gratitude.”
The Lawan Family
“We are very happy to be able to stay here. We feel very safe at the House"
“We’re still learning to eat American food” says Jonathan. After almost 16 collective years in the United States, the Lawan family says they are still growing accustomed to the food here, but “We love the Home Cook Hero meals. We enjoy chili and meatballs!”
The Lawan family says they are very thankful to have access to the Family House kitchen with the option to cook traditional Filipino recipes and that’s often where you can find Jonathan. The youngest son of Aurora and Jesus Lawan, Jonathan came a very long way to support his mother during her kidney transplant. Originally a programmer in the Philippines, Jonathan currently works as a mechanic—in Alaska.
Jonathan’s mother Aurora has to maintain a very limited “dialysis diet” that is low in sodium, phosphorous, potassium and protein, with limited fluids. Jonathan frequents a nearby Asian grocery market almost daily in order to be able to adapt traditional Filipino food to fit his mother’s strict diet. When he’s not helping his mother, Jonathan can be found doing chores around the Family House, which he sees as his way to give back and express his gratitude. “We are very happy to be able to stay here. We feel very safe at the House and if there are any complications, we are very close to the hospital.”
Hopefully, Aurora says, her new kidney is a second chance at a normal life. She, like Jonathan, also enjoys cooking, but has long been too weak to prepare her own meals. With Aurora’s kidney transplant, the Lawan family is looking forward to a brighter future. Currently residing in Atlantic City, New Jersey, Aurora says “I would love to visit the Philippines again one day. And that’s possible now.”
The Patel Family
“We are very much indebted to the Family House for the comfort it provided us during these difficult times, and continues to provide that much-needed service to many families who are still waiting. The House provides transplant families with a place to stay while waiting for the gift of life. How to pay for accommodations or even where to stay should be the last of any worries for a family who is already going through so much. The Family House was the answer to our prayers; one less thing to worry about!”
“Is there a doctor on board the flight?” sounds like something you would hear out of the movies—but for Irfan Patel, hearing those words and having a Good Samaritan doctor nearby saved his son Yusuf’s life.
Irfan Patel, of Newark, Delaware, and his family were fortunate enough to have received the gift of life—not once, but twice.
Two of Irfan’s four children were born with a rare genetic disorder known as Methylmalonic Acidemia (MMA), where the body cannot break down certain proteins and fats. It causes seizures, strokes, growth problems, developmental delays and frequent episodes of metabolic crisis.
“Both of my children have battled with these challenges and frequent hospitalizations,” explains Irfan. “Yusuf (now 12) would fall short on keeping up with his peers, both physically and emotionally, despite his best efforts. As he approached his ninth birthday, he slipped into stage four renal failure. It became clear that only a transplant would help prevent a further decline in Yusuf’s health and would aide in avoiding metabolic crises. Though we knew for sure that liver transplantation was not a treatment for MMA, we were hoping that it would transform his quality of life.”
Yusuf received a combined kidney/liver transplant a few years ago at a specialized children’s hospital in Philadelphia.
“His transplant was a huge success,” continues Irfan, “he transformed from a once lethargic kid to an active and thriving young man. While he does deal with some development delays, he is now well-rounded and enjoys participating in activities with his friends. Yusuf is on a number of volunteering teams.
“His energy level has gone up. We noticed the difference like night and day. From someone who would barely survive a few minutes of social activities, he is now bursting with energy. He plays the trumpet in his school’s band—something that before his transplant was only a dream."
“We went down a similar path for our daughter, Khadija (5 years). Diagnosed prenatally for MMA, she has been facing similar challenges as Yusuf – development delays, growth problems and frequent hospitalizations. Thankfully, she received the gift of a liver transplant just a few months ago at the same hospital as Yusuf."
“While going through the challenges that accompany any hospitalization, there was an oasis of peace and tranquility – a stress free zone for our family: Gift of Life Family House. Through all the stress and strain that accompanies transplant evaluations, surgery and post-transplant care, we are very much indebted to the Family House for the comfort it provided us during these difficult times, and continues to provide that much-needed service to many families who are still waiting. The Family House provides transplant families with a place to stay while waiting for the gift of life. How to pay for accommodations or even where to stay should be the last of any worries for a family who is already going through so much. The Family House was the answer to our prayers; one less thing to worry about!”
Irfan has spoken at several Gift of Life Family House and Gift of Life Donor Program events in honor of the courageous donor families who have changed the Patel Family’s lives forever.
“This could not have been possible without the donor families” he says. “Their selfless contribution to our children’s lives has motivated our family and friends to lead a number of campaigns to raise awareness on organ/tissue donation. While we have been blessed for having received the life-saving organs in time, not many are as lucky. There are still a number of people on the waiting list and the list keeps growing. This is an important initiative that needs support from one and all.”
John Paul Baksy
“We were treated with care and compassion beyond anything we could have imagined.”
John Paul Baksy had been sick since birth with a syndrome that affected his digestive system and caused many health complications – and at the tender age of just nine months old, he contracted a serious virus that began to shut down his liver. His care team at their local hospital in Virginia declared the situation life threatening and his case was officially transferred to a children’s hospital in Philadelphia.
John Paul and his mother Bridget were flown by an emergency medical aircraft while his dad, Tibor, quickly drove by car to meet them in Philadelphia. Soon after arriving in Philadelphia, John Paul was stabilized and officially listed for a lifesaving liver transplant. While Bridget stayed by John Paul’s side, her husband Tibor was unsure of where he would be able to spend the night – until doctors referred him to Gift of Life Family House.
Tibor initially arrived at the Family House hoping for nothing more than a place to lay his head. What he found, he said, was so much more. It was just what he needed after the stressful days he had been through – it was a place where he could rest and regain his strength.
The day after John Paul was listed for a transplant his parents were notified that, miraculously, there was an organ match. John Paul was prepped for surgery and received his gift of life, a liver transplant, on January 25, 2015 at 3:00 A.M.
Just one month after his transplant, John Paul was released from the hospital and the Baksy Family checked in at the Family House to be close to his doctors for follow-up appointments. “My wife Bridget, John Paul and I showed up again a little nervous about how we were going to do so far away from home in a strange city. We were treated with care and compassion beyond anything we could have imagined.
Tibor returned to Virginia and began commuting from their home state to Philadelphia, all while supporting their family financially and caring for their other five young children, all under 12 years of age.
But he knew that his son and wife were in good hands. As Bridget explains, “It was so nice, even so far away from home. There were no worries. It’s gated, protected, and there’s the van. You can just sign on for the van and get to the hospital. They even helped with the car seat and stroller. It was a lifesaver…the Family House provided everything you can think of.”
The Family House shuttle service was able to help Bridget and John Paul to and from all their appointments at the hospital thanks to the dedication of our guest services volunteers and through financial assistance from Family House contributors.
“It would have been so emotionally hard—we wouldn’t be able to form connections with people.” Bridget says of what she imagined John Paul’s transplant journey would have been like without the Family House. “There’d be no community bonds. The House is like one big family. There’s always someone to sit with. You don’t even have to talk with them, sitting with them is enough. You never feel alone.”
“We are happy to report that John Paul is home with family and doing well,” says Tibor. “We continue to have follow up appointments and stay at Gift of Life Family House. John Paul recognizes the staff and lights up when he sees them. We will always view the staff and residents as part of our extended family and remain extremely grateful. Please know that the work you do is meaningful and changes lives, not only for the recipients, but also for the families that support them. I cannot imagine what we would have done without the Family House.”
Meet Dhillon Shah: your average 11-year old boy who loves playing video games, watching the Disney Channel and is even a surprisingly accomplished magician if you catch him at the right time.
Dhillon and his mother, Deb, traveled to Philadelphia from North Carolina as they eagerly await the day that Dhillon can receive his precious gift of life – a heart transplant. While the Shahs anticipated being here for only a few weeks when they arrived at the Family House on August 21, 2014, their stay has turned into months. But throughout their time here, the Shahs have been very happy with their decision to choose Gift of Life Family House as their “home away from home” while navigating through the transplant journey.
When looking for a comfortable, temporary place to stay in the Philadelphia-area for Dhillon’s hospital visits, Deb was having difficulty finding a hotel that met their needs or an apartment that was already fully furnished. Even through their potential hotel connection, the process became increasingly stressful for the Shahs in the midst of traveling to and from doctor’s appointments. Then one day at the hospital, Deb stumbled upon a Family House brochure, and it quickly peaked her interest.
After talking with a hospital social worker and hearing from previous Family House guests she met through an online support group, Deb decided to move forward and request a room at the Family House – and she is so happy she did. “It’s more than a place to stay,” Deb expresses. Not only were there opportunities for support from the Family House social worker and the Caregiver Lifeline Program, but Deb was also happy to find that the other families staying at the Family House were an additional network of support for her and Dhillon. They were going through similar experiences and were easy to connect with and confide in. It was also very important for Deb that Dhillon – a very social child – had people to interact with on a regular basis. They have found that at the Family House. Dhillon is able to be himself and make friends with the other children, guests and staff – and has plenty of opportunities to show off his magic skills.
Dhillon’s favorite room in the Family House is the playroom, equipped with an Xbox and Wii, where he is able to perfect his Mario Cart skills. Dhillon also has taken a liking to the crocheting and knitting activity nights where he is able to be creative and make something on his own. Because of Dhillon’s enthusiasm, our lovely volunteers, Janet and Nettie, come each week to the Family House with a new project just for Dhillon to dive into. Janet and Nettie are just a few of the incredible volunteers who host activity nights at the Family House. These volunteers dedicate their time to provide our transplant patients and families. with an outlet for fun throughout their often hectic days.
The sweetness of the Shah family helps to make the Family House an even more special and impactful place to stay. While our rooms may resemble a hotel, the atmosphere is anything but – filled with immense support and understanding as each guest is navigating the transplant journey alongside each other. Fulfilling our mission as a “home away from home” is what we actively strive to accomplish on a daily basis, as we always work to meet the needs of our transplant patients and families emotionally, physically and mentally. It especially makes our efforts all the more worthwhile when we receive positive feedback from guests like Dhillon, as he simply states with an infectious smile: “I like it here.”
Savannah and Robert Anselmo
When meeting Savannah Anselmo, a rambunctious seven-year-old girl from Miramar, Florida, you would have never known that she underwent life-saving surgery as an infant. Savannah was diagnosed with biliary artesia when she was only four-months-old, which eventually led to the prognosis that she was in imminent need of a new liver. After being on the waiting list for the next eight months, Savannah thankfully received a liver transplant at a children’s hospital on December 29, 2007. Every six months, for post-transplant care, Savannah and her Dad, Robert, travel from Florida to Philadelphia to stay at their “home away from home”- Gift of Life Family House.
The Anselmo family has been in and out of the Family House ever since its first year of operation in 2011. After consulting with different hospital workers and even seeking advice from online forums for children with a similar condition, the buzz around the Family House sparked their interest and became their go-to lodging facility when seeking transplant-related care in the city.
Imagine having to relocate to a city that is more than 1,000 miles away from home while trying to find an affordable, temporary place to live. For Robert, financially speaking, there would not have been a practical alternative as he states, “There would be no way for us to continue care from out of town.” With hotel prices continuously rising, Robert’s other option would have been finding a Philadelphia-area home which would entail renting a car, commuting to the hospital and facing city traffic and the list goes on. Thankfully, the Anselmos have found the Family House, where the reduced nightly fee is not even half the cost of one night in a local hotel. Thanks to the Adopt-A-Family program, it allows us to charge our guests a nightly fee of $40 when the actual operating cost is $160.
When staying at the Family House, Savannah loves the playroom where she can play Wii and release her creativity through her Lego designs. In fact, both Savannah and Robert love spending time together in the playroom where they can relax and just have fun with each other. Robert especially loves having a nightly meal prepared by the Home Cook Hero volunteers where he does not have to worry about buying groceries. While Savannah is limited to the prepared meals she can eat due to her dairy allergy, the stocked pantry allows Robert to find alternative meals for her, which is maintained and organized by our dedicated volunteers. Many of our pantry items are donated through Wish List Drives that allow guests, like Savannah and Robert, to never go hungry.
For every six months Savannah and Robert stay at the Family House, we are happy to know that their post-transplant needs are met. Savannah loves the Philadelphia-area where she can, “go around in the city to places like Franklin Square”- all with her Dad by her side. Rob
Please consider supporting the Family House with a donation – your generosity is greatly appreciated. Click here.