Captain Elliot Fights UBA5

Hello, my name is Kevin and I am fundraising for my son. Elliot is a sweet 5 month old boy who unfortunately got dealt some rough cards, or in his case “a mutation of the UBA5 gene”. This genetic mutation is so rare that only 30 children have been clinically diagnosed. As you can imagine, research is limited and there is no cure at this time.

This life-threatening, progressive neurological condition creates many problems for Elliot. One of his current battles includes combating infantile spasms and other types of seizures. Children with the UBA5 gene mutation are known to not respond well to medications and other treatments that are supposed to stop seizures. This is the road Elliot is on right now. We are about to start our 4th line of treatment, the ketogenic diet, but this will, unfortunately, require a lengthy hospital stay. His condition will affect his ability to do almost everything. He may never be able to do the many things that we all take for granted such as walking and talking.

With all of Elliot’s medical needs and complexities, we have had to spend a lot of time in the hospital and many days away from work.

We have had a lot of expenses covered by our health plan, but medical costs are rising as his needs become greater. We have had numerous emergency room visits, been rushed to the PICU, and extended hospital stays. We are asking for donations to help with medical costs and Elliot’s care, both now and in the future. He will need a lot of support in the months ahead (medical expenses, travel costs, therapies, in-home care, and ongoing support for other needs that may arise as a result of his condition). No contribution is too small and is greatly appreciated. This has been every parent’s worst nightmare, but we are ready to get Elliot the best care and treatment.

We have been so blessed and fortunate to receive support from our village of loved ones during this unexpected, completely terrifying and life-altering event. We appreciate all of our family, friends, church, workplace, and people who have never even met us but have been praying for us and offering to help.

We ask that you continue to pray for our beloved boy, and our family as we navigate this new “normal”. We pray that in the months and years ahead there is breakthrough research that creates a cure for his disease. We pray that during this time we are able to treat his symptoms as they come and give him the best support possible.

Thank you for your love, ongoing prayers and support. We love each and every one of you in our community.

With love,

Kevin, Elliot’s father