From NICU to Two Years Strong: Thaddeus’ Journey with Non Ketotic Hyperglycinemia
- 2 days ago
- 2 min read
My son Thaddeus was born February 10th 2024. What should have been the happiest moment of life, became a nightmare.
After 12 days of watching my child never cry, never open his eyes and need ventilator support we had our diagnosis, Non Ketotic Hyperglycinema. From that moment life changed, but I'm here to share our story and offer hope. This is Thaddeus' nonketotic hyperglycinemia journey.
I was told Thaddeus would never leave the NICU, he would never have a quality of life, he would never see his first birthday.
Thaddeus just turned TWO!
He loves his best friend Douglas, he enjoys worship and classical music, he loves the water, and being outdoors. Thaddeus is fierce, he's sassy, he's a force to reckon with, and the strength he has, has to be God given...
Thaddeus along with NKH was born with the RYR1 gene mutation, has a cleft palate and bilateral club feet. Thaddeus has severe global developmental delays, CVI blindess, Cerebral Palsy, Dystonia (especially in his gut, which makes feeding difficult).
Thaddeus has had 25 hospital admissions in 2 years, one admission at KCH leaving us 2.5hrs from home for 211 Days.
Thaddeus has had 200 seizures within a 24hr period while on EEG, and has had 3 surgeries at this time.
While I never expected this to be our life, it's our new normal.
There's something rewarding about raising a child only you understand, until you find the NKH community. This is the place you'll find no judgement, real/raw advice, real connections and friendships with people you've never met because their child shares a rare diagnosis like yours.
— Alisha Cooper, Mom, Caregiver, Advocate
Rare Connections Caregiver Support Group - open to ALL rare disease caregivers
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