Support Thaddeus' Fight Against NKH

Hi, I'm Lisha... on February 10 2024, I gave birth to one of the most beautiful babies God ever created... within hours after birth me and family realized something was desperately wrong. Thaddeus Paul was soon diagnosed with Non Ketotic Hyperglycinemia, it's a very rare, genetic metabolic disorder, it's completely devasting... I got a life expectancy of 2 years, 2 weeks into my son's life... No parent wants that...

With this disease Thaddeus suffers from focal, and subclinical seizures, infantile spasms, low muscle tone, respiratory insufficiency, sleep apnea, reflux, poor feeding, several GI issues, global developmental delays. He was also diagnosed with RYR1 mutation (malignant hyperthermia), he's got a cleft palate, and bilateral club feet. As you could imagine, we spend most of our time in University of Kentuckys Children's Hospital. Thaddeus will be four months old June 10th, and he's lived everyday inpatient besides 17 day we got to enjoy him at home... Dad and I have to be at bedside due to Thaddeus condition, cause it goes from stable to critical in a blink of an eye. Thaddeus is currently in Cincinnati Children's in Ohio, for seizure management, keto diet, g tube surgery, ear tubes and to have an anesthesiologist familiar with his RYR1 mutation. Thaddeus diagnosis is also devasting because there isn't no funding for this disease, everything being done for research is done by the families living with NKH babies...

There's medications that aren't covered, medical equipment that insurance won't pay for, rescue seizure meds not covered.. at home Thaddeus has oxygen, home suction, and a monitor to keep track of his o2 stats and pulse... This disease is so rare all Dr's are a travel, right now we are 4.5hrs from home... And our plan is to try whenever we can get our sweet baby more stable, to Colorado to see the NKH Dr Jonah Vanhove.... Anything at all would be greatly appreciated...