Six-year-old Amelia has been through a lot since she was diagnosed with Alagille syndrome, a rare genetic disorder characterized by abnormalities to the bile ducts that harm the liver and other parts of the body.
She had heart and kidney surgeries even before her liver started to fail. After a liver transplant in 2016, she developed PTLD (Post-Transplant Lymphoproliferative Disorder) for which she is now undergoing chemotherapy. This complication and treatment means more visits to the hospital.
When she and her family come to Philadelphia for these visits, they stay here at the Family House. On Amelia’s first visit, right after her liver transplant, she spotted the child-sized Adirondack chairs on our patio. It was too cold and snowy to sit there then, but on a return visit in the spring, she was really looking forward to them. To her surprise, the chairs weren’t there!
Amelia asked one of the staff members, “Where are the little tiny girl chairs?” The staff member replied, “They’re not out there?” Soon, the chairs were back in place and Amelia happily claimed “hers.”
Her mother, Bonnie, says: “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.”
For Amelia, the Family House is a safe and welcoming place in between the “ouchies” of her medical care. For her parents, Bonnie and Brian, it’s an oasis of peace where their burdens are lifted—both financially and emotionally. They are grateful for hot meals cooked by friendly volunteers, cozy rooms and restful surroundings, and access to a whole community of people who truly understand what they’re going through.
“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.
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 here,” says Bonnie.