Nehemiah and his family need help.  His journey will be a lifetime of struggles to no end.  He’s so sweet and deserves so much more than he was dealt.  I wish there was a cure, but sadly there isn’t.  Mom was forced to quit her job and online school.  Nehemiah needs around the clock care.  It took until 18 months to get a diagnosis of Syngap1, after suffering since he was 6 months old.  At 12 months the daycare notified us that they couldn’t care for his needs.  He faces daily unimaginable challenges including, severe feeding problems, severe sleep issues, very low muscle tone, aspiration into his lungs, and seizures.  It’s is just a few of what he goes through and it’s only getting worse.   He has level 3 autism and physically disabled. 

Nehemiah is in physical therapy, speech therapy, feeding therapy, and ABA at home. His days are filled therapy, many appts with several different doctors.  We just need help to get him through this.  It’s heartbreaking and scary.  

UPDATE:

His medical journey has only become more complex. Nehemiah has been aspirating all liquids, despite his fluids being thickened. After further testing, doctors discovered an internal opening that is causing the aspiration. He recently underwent a procedure where they performed an injection in hopes of closing it. We will have to wait for a follow-up swallow study in the coming months to see if it was successful. Additionally, he was admitted for a 12-hour sleep study to determine if oxygen loss, possibly due to seizures or other factors, is affecting his brain. Watching him struggle through these tests has been heartbreaking, but we remain hopeful for answers and progress.

As his mother, my days are devoted to managing his care and ensuring he gets the support he needs. This has made it impossible for me to work, but Nehemiah’s well-being will always come first. Our family is doing everything we can, but we need help to cover the increasing medical costs, therapy expenses, travel and essential resources that Nehemiah requires.

We are asking for your generosity to help give Nehemiah the best chance at progress and a fulfilling life. Your donations will directly contribute to his ongoing therapies, medical appointments, specialized equipment, and other crucial needs.

Nehemiah is a fighter, and with your support, I know we can help him overcome the challenges ahead. Thank you for taking the time to read our story and for any contributions, prayers, or shares.

With gratitude,

Janae and Family