Maverick Myers

This is Maverick! Our beautiful, resilient, strong, son! At age three Maverick was diagnosed with a rare genetic disease, Nescav Syndrome (KIF1A). At the time of his diagnosis there were only 400 other people in the whole entire world that have this same disease. His doctors did not and still do not have many answers on his disease because it is so new! There is being significant research on it now, but we just like to take it day by day and enjoy Maverick! Underneath the umbrella of his rare genetic disease he also struggles with Epilepsy ESES and scoliosis that he will eventually need surgery to correct. Even with these daily obstacles he is a ray of sunshine and pure happiness and joy! Though we were told things like “he will never walk” and “he will never talk”, Maverick showed us all pretty early that he is determined and he does not give up! Though he is non verbal he has found his own ways to communicate with us and though he may not walk yet he works so hard at physical therapy and is making huge strides with walking with a walker! Maverick is inspirational and he has a great team behind him! Our older son Declan has played a huge part in his growth as well, always doing OT exercises or encouraging him while he is walking! This has been an extremely hard world to navigate so thank you to anyone who has or will consider donating to Maverick. We genuinely appreciate each and every one of you!

Family and friends of Maverick Myers are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.

Maverick has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!