Savannah's Ohtahara - Medical Fund

Savannah Nault was born with a rare seizure disorder, Ohtahara Syndrome that caused her to have hundreds of seizures a day since her first day of life.  It is an extremely rare diagnosis with less than 150 cases in the world.  Ohtahara is a very severe disorder that is resistant to medication.  Most children do not live past two years old.  Of those who live past two years old the prognosis is a life of limited mental and physical abilities.

She spent the first few months in and out of hospitals and still continues to go frequently.  She has multiple Dr. office visits weekly to different specialists.  Despite trying several anti-seizure meds, she continues to suffer from seizures daily preventing her from developing.   At almost a year old, she still can’t hold her head, reach for toys, smile, and she barely kicks her arms and legs.  This “go fund me” account is being set up to help with the financial burden that this awful disease has caused. 

The financial burden of her treatment has become an extreme burden.   At one point they were even told they needed to send the pharmacy $4,500 or they would not send her medication.  The bills not covered by insurance have quickly added up to the tens of thousands of dollars.  When Jennifer shared their story with me I knew I had to do something.  With all the go-fund-me pages raising money for everything from birthday parties to lost tool kits, it’s easy to grow skeptical of where the money will go.  This is one case where I know that your donation will go straight toward the care of Savannah.  Thank you.