Kainen N.
Nebraska
Birth Date - Septeber 14, 2010
Diagnosis - EHLERS DANLOS SYNDROME
THEME: FANTASY: Wizards, (Cute) Dragons, Knights, Castles, and Unicorns
Due Date: 4/1/17
Kainen's Story
Kainen was born early, and signs of his first rare disease were already apparent in the NICU. He couldn't eat well and when he did, he screamed in terrible pain, and had vomiting and diarrhea. He'd stop breathing while asleep, and also couldn't maintain his temperature on his own. His doctors were concerned, but sent him home while keeping a watchful eye. There were months of doctors, ER visits, hospital stays, and a frightening episode of going into shock in midair on a flight home after Christmas.
We finally got him in to see an allergist. Kainen was 17 months when he received the diagnosis of “Severe Food Protein Induced Enterocolitis Syndrome.” Many foods were removed from his diet. We thought good - we have an answer- things will get better, but they didn't. Instead Kainen continued to spiral downhill. He was too afraid to eat. He kept throwing up the expensive formula, and the trips to the ER and stays at the hospital continued. He was deemed “Failure To Thrive”, and we started feeding therapy, chewing therapy, speech therapy, and behavior therapy in hopes to get him going. Nothing worked, and the decision was made to place a G Tube. That had to be replaced with a G/J tube to bypass his stomach.
We began to notice him falling for no reason, still in pain with no cause, and bruising becoming easier and easier. He started sleeping most of the day. His GI sent us to a Geneticist for testing. In July 2016 at the age of 5, we received a new additional diagnosis for the rare disease known as Ehlers Danlos Syndrome, and a heart Echo confirmed it was affecting his heart, aortic and pulmonary arteries. The EDS was also causing his joints (large and small) to spontaneously dislocate or partially dislocate causing chronic and immense pain.
We've since added a pediatric wheelchair to our growing list of assistive medical devices to help him out when he's too tired and in pain to move. Today, Kainen spends his days trying to be "normal" in his own way and enjoy life. Currently, he spends a lot of time at therapy appointments … Speech, OT, PT, Aqua Therapy, and Equine Therapy each twice a week, and doctor appointments.
