Jennifer Granillo-Hunt

My name is Jen, Mimi to our sweet Nehemiah. I adopted his mama, Janae, when she was 16 and pregnant with her oldest. Nehemiah, her second, was diagnosed with a rare genetic disorder called Syngap1, and this beautiful family of 5 needs help. It took almost a year of him suffering around the clock to finally get a diagnosis, which was at 17 months. My daughter was already pregnant with her last little one. She was forced to quit her job when he turned a year old because the daycare couldn’t handle his situation and pain. Nehemiah just turned 2 in June. He has so many doctors, PT, feeding therapy, speech therapy, occupational therapy, and ABA at home. He struggles with severe sensory issues, feeding status are at 3-5 months old, aspiration, seizures, sleep apnea, and this is just some. He needs help around the clock. I’ve truly never seen anything like it, and it’s heartbreaking and scary. There is so much he needs, but with all this going on and losing one of their vehicles due to trying to keep a roof over their heads is wrenching. Looking to the community to help them. He deserves the world and didn’t ask for this.  I know losing a child is terrible, but on the flip side of losing your child to an incurable disorder where they suffer daily, will never be able to be alone, will struggle to meet even the smallest milestones weighs heavily on your heart.  My daughter is a warrior for enduring this and our sweet boy is a fighter.