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Clear Cell Sarcoma of the Kidney

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Kainen adress

Kainen adress

Date of birth: September 14, 2010
Main diagnosis: Ehlers Danlos Syndrome
Special interests: Dragons, trains, mail, being free
Mom: Theresa
Dad: Bruce
Siblings: Michaela, Aiden

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Kainen adress
Kainen started life arriving early and taking up residence in the NICU where he already showed signs of his two rare disorders but at the time we didn't know what. He couldn't regulate his temp, couldn't feed well, was always fussy, and in pain, but eventually they let us take him home. It was the start of frequent hospital visits, Doctor appointments, ER trips, tests, etc. By 17 months after watching him go into shock on an airplane and an ambulance ride to the hospital we managed to get into a Allergyist who diagnosed him with his first rare disease known as Food Protein Enterocoloitis Syndrome. A delayed allergic reaction to the proteins that make up food. The stomach cramps, the vomiting, the bloody diarrhea, shock were all caused by this. We thought okay, we know what's going on he will get better BUT he didn't! He was afraid to eat and would starve himself. We tried feeding, chewing, and behavior therapy to no avail, and a NG tube was placed at 4 years of age hat soon became a G tube. Again, we thought now he will get better, BUT once again he still spiraled downhill. He was throwing up the formula pumped in, he was STILL in horrible pain, easily bruised, his limbs were just dropping from under him and he'd slam into the ground, he was tired and worn to the point he started sleeping 75% of his days away. At 4 his G tube became a J tube to bypass his stomach. Enter the geneticist and at age 5 Kainen received his 2nd rare disease dx of Ehlers Danlos Syndrome a degenerative connective tissue disorder. Plainly, his Collagen is different than others causing his joints to dislocate with the slightest movement, an echo showed the disease was also affecting his heart causing it to be enlarged as well as his aortic and pulmonary arteries. Now our house is filled with new med equipment (a wheelchair, gait trainer, sit to stand, and bathing system). He goes to therapy everyday Monday thru Friday twice a day sometimes 3 in hopes to try and stabilize the muscles on either side of his joints to help keep them in place and slow the arthritis and damage caused by his disease. (Aqua, Equine, Physical, Occupational, and Speech Therapies) On the side he has a temperature regulation disorder and Sleep Breathing Disorder. BUT through all the pain, the treatments, setbacks, surgeries, and other obstacles he has remained bright and cheerful waging onward and not giving up! His FB page is Kai's Ohana at www.facebook.com/KaisOhana Update from Kainen's mom on December 9, 2017: Hiya! Kainen wanted share the mail that's he's received! He says thanks and sends huggles to everyone. He looks forward to opening his box and pulling the postcards and letters out. Especially, on bad days when he'll go through them over and over having me read each one and talk about the neat pictures for distraction from his pain. Thank you very much, Theresa Mother of Kainen