Child with Aicardi-Goutières Syndrome Improves Quality of Life
Life with Aicardi-Goutières Syndrome
When you see Phippin’s wide smile, it’s hard not to smile back. His parents describe him as “a spunky little old soul.” But since infancy, he has struggled with a rare disease called Aicardi-Goutières Syndrome, or AGS.
AGS is a progressive neurological disease – in other words, it only gets worse as time goes on. It can lead to other health problems as well, such as painful autoimmune conditions. Treatment can slow the progression of the disease, but there is no known cure.
Treatment Found... More than 1,900 Miles away
“He tends to lose skills over time,” said Phippin’s parents. "The best team of doctors who are studying AGS, and finding treatment for it, are at Children’s Hospital of Philadelphia.”
There’s only one problem, and it’s a big one. Phippin’s family lives in Utah, and goes to Philadelphia on a yearly basis. It’s a flight of 1,906 miles – and that’s just going one way. If they drove, it would take much more time and almost as much money.
Worse, insurance doesn’t cover many of Phippin’s treatments, let alone travel costs. “It gets pricey for our family of 5,” said Phippin’s parents. They knew Phippin was fighting for his life – but what were his odds of winning?
Mercy Medical Angels Steps In
Sometimes when a medical battle seems impossible to win, angels step in – Mercy Medical Angels, to be exact! Mercy Medical Angels teamed up with the Hogan Foundation and Delta Airlines to arrange and pay for Phippin’s flights to Children’s Hospital of Philadelphia.
“Flying from Utah to Philadelphia is our best shot at slowing the loss of abilities,” said Phippin’s parents, “and Mercy Medical Angels makes that possible! Thanks to you, Phippin can receive the care he needs.”
“We Were Blown Away...”
When asked how Mercy Medical Angels changed their lives, Phippin’s parents can’t keep their answers short.
“If it weren’t for Mercy Medical Angels, Phippin could not have received the care he needed. We were blown away that an organization like this exists. Mercy Medical Angels helps our family afford these necessary trips to Children’s Hospital of Philadelphia.”
“You are helping our son live as long and as happy of a life as possible – thank you!”
Read More Patient Stories
