Help Dylan Get Gene Therapy

Hi, my name is Amanda Lopez and I’m fundraising for my dear friend and college roommate Megan, her husband Dustin, (residents of Independence, OR) and most importantly, her son Dylan Wise. 

Dylan is less than a month old and was diagnosed with Spinal Muscular Atrophy- more commonly known as SMA. Type 1 SMA, which Dylan was diagnosed with is the most severe. As of yet, there is no complete cure for SMA. However, the discovery of the genetic cause of SMA has led to the development of several treatment options that affect the genes involved in SMA.

SMA Type 1 is a life-limiting condition. Though it is not possible to accurately predict, for the majority of children (approximately 95%) life expectancy is less than 18 months unless pharmacological treatment is introduced. In general, unless started on one of the approved pharmacological treatments, babies diagnosed within the first few weeks or months of life have a significantly shorter life expectancy.

The good news is that he was diagnosed super early and they are hoping to start treatment this coming week to halt any progression via gene therapy. The not so good news, gene therapy is expensive! While they have insurance, the estimated cost before insurance is $4million. No one should have to worry about how much taking care of their sick baby is going to cost. Please donate what you can and if you don’t have the funds to donate now, please share. Please keep Dylan and your thoughts and prayers and continue to send the family love.