Help Charlotte in her fight against Niemann Pick

About a month ago, Charlotte was diagnosed with a rare genetic disease called Niemann Pick Disease Type A/B (ASMD). We first noticed something wasn’t right when she was only a couple months old and we started working with our pediatrician and going to appointments to figure out what was wrong with our precious baby girl. Finally after a genetic test was done the diagnosis was clear. There is unfortunately no cure. There is no currently available treatment for this terminal disease. The most we can do is palliative care come July. Since the diagnosis we have been working closely with a team of doctors and researchers in Chapel Hill at the University of North Carolina. They have done tons of research and work to find some shimmer of hope. There is a new medicine that could help reach the brain part of this disease. We are awaiting approval for this drug that may help her live longer and could be a potential cure, but it’s going to take a few months to get approval and the treatment will be very expensive. We desperately need to get the word out to the FDA and Jazz Pharmaceuticals that we need approval for Charlotte and other families like us! This beautiful baby girl deserves to live and experience life as fully as possible. If you are able to donate to Charlotte’s GoFundMe please do so below. We understand if you can’t, but everyone can share this post. Help us get the word out! We will use any money raised for Charlotte and her continuing care. Any money that we don’t use will be donated to another family/child that is suffering from this incurable disease through the Wilder Nation Foundation. 

We ask for everyone’s continued prayers and love for Charlotte and our family in this difficult journey!