Ila Hays Medical Fund and Travel Expense

Our daughter Ila was diagnosed with a rare genetic brain disorder where the white matter in her brain is deteriorating. There are no cures for this disorder but we are looking into every avenue we possibly can in order to slow or stop the progression in order to save our daughter. In Pittsburgh there is a team  that works specially with rare genetic brain disorders and they have seen promising things in some patients with cord blood transplants and bone marrow transplants. However, Pittsburgh won't see her without more genetic background and for this we will have to shell out a large sum of money without the help of insurance to get it done in a timely manner. On top of this genetic disorder, Ila's brain stem is also being pinched by a deformed vertebrate and neck bone and this has caused inflammation in her brain stem. This is something surgery may be able to alleviate, but unfortunately doctors here are very unlikely to want to perform surgery due to how unstable that area of the neck is for an infant. We are seeking out surgeons at Boston Children's Hospital, the best in the country, and praying that they will take on the challenge. Time is of the essence for our girl and we are prepared for a fight, but it comes at a cost. Not only will medical bills be daunting, but we are also faced with the challenge of traveling across the country and missing days of work with both of us being hourly employees. We are never the type of people to ask for the help of others, but this is a mountain we have to climb and we can't do it alone. If you are able please consider donating towards Ila's medical bills and travel expenses. Above all else please pray for healing for our sweet girl as she faces the unknown months ahead. This is big and scary, but our God is bigger.