Noah Coy Barringer is a two-year-old with a rare genetic disorder that causes seizures and developmental regression. This disorder needs constant care and monitoring by medical professionals.
Our goal is to make sure Noah is able to visit his team of specialists. Noah requires a handicap accessible vehicle to safely get from doctor to doctor. With your help, Noah will be able to go to therapy, visit the doctor, and receive the medical care that he needs to live comfortably.
On August 25, Noah woke up in the middle of the night crying, suffering from a high-grade fever, throwing up every ounce of his feeding. Then, he started to shake. It all happened so suddenly.
This was Noah’s first seizure.
At only 6 months old, Noah experienced a seizure that lasted well into the morning— face blotchy, arms shaking, watery eyes, and quivering mouth. He has been in and out of the hospital ever since. His frequent seizures have taken a toll on his development too.
Now, at two years old, Noah has lost all muscle tone, emotion, has vision delays, cannot walk, talk, eat by mouth, sit up or roll over. He uses a feeding tube and follows a strict diet, and has a port in his chest for frequent lab work. Noah uses a wheelchair, wears glasses, uses an oxygen machine and suction machine, all in-home.
He receives speech, feeding, vision, physical, and developmental therapy. With these therapies and frequent doctor visits, Noah is becoming stronger and his seizures are better controlled.
After many tests and countless doctors, Noah has been diagnosed with an extremely rare genetic disorder called PIGA Deficiency Disorder. 12 cases of this disorder have been diagnosed and only three cases are similar to Noah’s genetic mutation.
Symptoms including infantile-onset seizures and development regression leading to intellectual disabilities, suffering from spasms with chaotic and disorganized electrical brain waves without a recognizable pattern.
Other observable traits include weak muscle tone, delayed brain nerve impulses, vision impairments, and a variety of other anomalies that affect vital organs. In addition to PIGA Deficiency Disorder, Noah has been diagnosed with Pulmonary aspiration and a metabolic disorder.
A Word from Noah’s Mother
Noah and I want to thank you for your time, kindness, and generosity.
We have been in and out of the hospital many times over the past two years. Needless to say, we were worried that Noah would not make it to see his second birthday, but he has been blessed with another year.
Although my son struggles every day, we continue to find ways to give Noah the best care and the life every child deserves. I want to provide everything he needs to be comfortable and happy with this disorder. This includes the visits to his team of specialists and therapists.
In order to make these trips, Noah requires a handicap accessible vehicle for his wheelchair. Handicap vehicle modifications are an investment towards his quality of life. I’m hoping that with your support, we will be able to make this a reality.
Noah requires constant special care. I am always by my son’s side, which has left me unable to work. I’m a single mother and I’m so grateful for the love and support we have received from my family.