I've posted this link before, along with others. For investors who appreciate this family's efforts you may also want to help out.
Update from 2 months ago by Terri Ellsowrth from Billy's gofundme page.
"I promised to post updates and so this video is from today from Billy's summer daycamp that he started this week and will attend thru July 22. Billy has been receiving the Eteplirsen drug from Sarepta Therapeutics since August 2011, so almost 5 full years. This ROM shown in this video clip at 15 1/2 years old is nothing short of a miracle and is absolutely a result of his Eteplirsen drug. Some have asked how can I be so sure that it's the drug and not steroids causing his stabilization and independence. My explanation is two fold-1st, as most know by now, Billy was an extreme toewalker when he screened and started the trial five years ago which means he should have gone off his feet 3 to 4 years ago. Second, thousands of boys around the world are receiving steroid treatment but have lost ambulation at a much younger age than Billy is now. We have the Natural History of the disease documenting this fact. In my 2 1/2 minute speech at adcomm, it was impossible to mention all of Billy's accomplishments that I know defy the natural history of the disease. For instance, almost nightly Billy wakes to use the restroom and then climbs back into bed BY HIMSELF. He NEVER calls out for help. This again, is nothing short of a miracle.
While I continue to keep him as healthy as possible and advocate for approval of his drug and then all the follow on drugs that could follow, I also strive to maintain for him as "normal" a lifestyle as possible in order to offer him stability & security that he deserves. As I manage to hold onto my career, it's a balancing act of keeping my child's health and wellbeing in check, which is obviously most important, as we wait and wait and wait a little longer for these first life extending treatments. But the struggle is real and persistent for families living with rare disease and a terminally ill child. Fundraising for home modifications and necessities were never expected but are reality in order to keep your child as safe and comfortable as possible and has become the norm for most families as most of us do not have foundations and huge fundraisers to provide these necessities. So I will continue to share Billy's Wish page and provide updates for those who wish to follow Billy's Journey. Please feel free to share this page to those that may want to help and also follow Billy's progress along with his escapades! "