The Family House rounds out a ‘circle of care’ for transplant patients and families
Our ‘home away from home’ has helped thousands find peace of mind, and hope.
‘Where does a polar bear keep his money?” teases 5-year-old Amelia Torgersen to our reception desk staff who have been eagerly awaiting her arrival. “In the snow bank,” she answers and giggles.
Every time Amelia comes running into the Gift of Life Family House with her parents, Bonnie and Brian, she immediately looks for the smiling faces she has come to know and trust. She brings her latest stuffed “friend” and asks that it be given a yellow wristband ID, just like hers.
It’s hard to believe that bouncy, fun-loving Amelia had a liver transplant just nine months ago, or that she is now undergoing chemotherapy for PTLD (Post-Transplant Lymphoproliferative Disorder), a complication that can occur after transplant. Amelia has struggled since birth with Alagille syndrome, a rare genetic disorder characterized by abnormalities to the bile ducts that harm the liver and can affect other parts of the body. The genetic defect that causes Alagille can be inherited, or occur randomly.
Amelia had heart and kidney surgeries, even before her liver started to fail. At that point, the Torgersens relocated from their home in Nashville, Tenn. through Brian’s employer — first to Florida and then to Pittsburgh. They wanted to be as close as possible to The Children’s Hospital of Philadelphia and its renowned Alagille Syndrome Clinical Care Program, and for her transplant surgery.
Not one to complain, Amelia now bravely faces too many ‘ouchies’ during chemotherapy, but looks forward to staying at the Family House where our staff make her feel special.
Five years of caring
On July 11th, Gift of Life Family House celebrated its fifth year of serving transplant patients and their families receiving care at one of the eight transplant centers in Greater Philadelphia. In this short time, we have served more than 1,300 transplant families, many of whom have stayed with us several times over the course of their loved one’s care. In total, we’ve provided over 33,000 room nights of comfort.
“At first, we didn’t know if it was going to work,” says founder and CEO, Howard Nathan, reflecting back on the leap of faith that brought together benefactors, board members, health care providers, government agencies, and other supporters to help build a “house” for patients and families going through the transplant process.
Today, the success of the Family House is evident. “I ask almost every day about occupancy. It makes me proud when 28 out of our 30 rooms are filled. It reminds me that we did the right thing, that the need that’s desperately there is being met.
“I think what sets us apart is our staff members who are there, available, and who care 24/7,” notes Howard. “I think that families understand that and are touched by it.”
The Torgersens agree. When Amelia came to stay at the Family House after her liver transplant in December, she was drawn to the kid-size Adirondack chairs on our patio. But because it was cold and snowy, she couldn’t sit outside. When they came to stay in the spring, Amelia’s first thought was to run outside to sit in ‘her’ chair, but the chairs weren’t there, explains Brian. “So we go inside to Diana Elbanna (resident manager) and Amelia says, ‘Miss Diana, where are the little tiny girl chairs?’ And Diana says, ‘They’re not out there?’ So there was this brief commotion over the chairs. The next week, guess what, the little tiny girl chairs were there.”
Adds Bonnie, “Even on the days that are difficult for Amelia, she talks about sitting in ‘her’ chair. And so the patio is somewhere we can go with her at the end of the day where she has a little time to sit in her chair and just relax and refuel for the next day.”
Whether it’s having access to a fully stocked pantry and tasty leftovers if they miss the evening meal, or toiletries they forgot to pack, the Family House is a safe and comforting haven for them. “We don’t lack for anything there,” says Bonnie.
Rounding out a ‘circle of care’
A ‘circle of care’ for transplant patients and families begins when a person with end-stage organ failure is listed for transplant. The list is national and Gift of Life Donor Program works with its partners around the country to find willing donor families and viable organs.
“The reality is that the number of people who can donate is very small. Only about 1 to 2 percent of all of the people who pass away can be considered as potential organ donors,” explains Howard, who has been with Gift of Life Donor Program since 1978 and is its President and CEO. “In our region, out of about 40,000 people who die each year in the 129 hospitals we serve, there are only approximately 800 who could be potential organ donors. That’s why there’s a shortage. It’s not because people are unwilling. It’s because the number who are medically suitable is very small.
“This year we’ll have over 500 organ donors and more than 1,300 people receiving transplants in our region. That doesn’t sound like a big number, but it’s the largest anywhere in the United States, probably the world, for any one region.”
Gift of Life Donor Program is responsible for working with the transplant teams to preserve the organs and safely transport them to waiting surgeons, patients, and families. The Family House takes care of families while their loved ones are waiting to be transplanted, during recovery, and throughout post-transplant care. While other transplant houses typically serve one transplant center, the Family House serves all eight centers in its vicinity. “That’s pretty unique, and I’m very proud of that,” says Howard.
In addition to affordable lodging, home-cooked meals, and transportation, the Family House also provides education, counseling, and emotional support through its Caregiver Lifeline Program. The first of its kind, this program provides a supportive network and educational services specifically tailored to the needs of organ transplant patients, family members and caregivers — those staying at the Family House as well as those living in the broader community.
For the Torgersens, the Family House is a “tool in a toolbox” to make life easier. “When you’re at that point of fear and anxiety — things that come with the unknown — there’s somebody that’s got your back. It doesn’t make anybody’s individual situation better, their difficulties are going to be just as challenging, but to know somebody’s got your back is meaningful.” explains Brian.
Making every day count
When traveling down the long and winding road of caring for a chronically ill loved one, it is easy to lose focus on the everyday things that give life meaning.
“We had to work very hard to give Amelia what we feel is the best quality of life: That is, to step away from the clinical side of things and remember that she’s a little girl — and take her to the beach, take her to Disney, take her to the park. Sometimes with the medical side of things, you almost want to put life on hold — until transplant, or until she’s done with chemo, or things like that,” explains Bonnie.
For Amelia’s fifth birthday, at her request, the family went camping. When the weather turned warm, they packed Amelia’s medical gear, along with their camping gear, and headed out to Allegheny National Forest. “Amelia is definitely an outdoor girl,” laughs Bonnie. “We gave her a choice of going out on a boat or hiking. She picked hiking. She had a little walking stick. She kept saying, ‘I’m the leader, follow the leader.’ She loves to explore. She enjoyed studying the rocks, the different leaves, and trees. That’s her happy place.”
Adds Brian: “She doesn’t understand life. As far as she knows, it’s kind of rough, because it’s always been rough. But she’s a fun, loving spirit that when you’re around her you just smile. And you don’t do it because she said something funny; you do it because she’s this sweet, beautiful thing.”
Although they have health insurance, the Torgersens have faced substantial out-of-pocket costs, since Amelia’s birth, for medications, medical supplies, formula for her tube feedings, and travel to and from Philadelphia. “By the time you put all of the pieces together, it’s a costly process,” says Brian.
Securing the Family House’s future
“Each year, we have to raise about $1.7 to $1.8 million dollars just to keep the doors open,” notes Howard. Driving the need for funds is the Family House’s commitment to maintaining a low nightly rate of $40 even though the actual cost for providing all of the included services is $165 per room per night. Each room accommodates up to four people. Families who can’t afford the nightly fee are given subsidies. “We don’t turn anyone away because of their inability to pay,” adds Howard.
The Family House depends on charitable contributions, large and small, to make this possible. “Last year we had over 2,300 individuals or organizations give us charitable contributions. I wish I could name them all. We’ve even had grade school kids hold fundraisers and collect money at school. Businesses will do dress-down days and collect $5 from everybody wearing blue jeans. Those combined gifts of $200, $300, they help.”
The Family House works, adds Howard, because of neighbors helping neighbors, whether through charitable contributions or by volunteering.
“Every time I walk through the door at the Family House, it really makes me proud of our team, of the families who are courageous in going through transplantation, and our volunteers. When I meet our Home Cook Heroes — many of whom are transplant families — and our other volunteers, I am truly grateful. We simply couldn’t do it without them.”
To make a charitable gift to the Family House, or to volunteer, please use the enclosed envelope or visit us online at www.GiftofLifeFamilyHouse.org.
Stay tuned over the next few months as Gift of Life Family House unveils a special way that you, your family and friends can celebrate 5 years of the Family House!