Jimmy K. - Quilt Finished in 1999

Born: December 26, 1991

Illness: Brain Tumor Teratoma, Pelvis Tumor Osteoid Ostemoma and Autism

Jimmy's Story

written by mom Lin

Jimmy was born on December 26th, 1991. He was my 4th child. My first daughter, Lori passed away in 1981 to a malignant brain tumor. When Jimmy was born he seemed healthy except for a overly sensitive startle reflex. (Which we were to find out later was due to mild Cerebral Palsy in the thalamus of the brain).

At 18 months old, Jimmy was displaying signs of Autism. He was scheduled for a routine MRI. of the brain and low and behold a brain tumor was found. (In the same spot as his older sister's was). In the cerebellum. Surgery was done and the doctors found it to be a rare benign Teratoma tumor. It was removed and life seemed to go back to normal. We had Mike and Amy, my other two children, scanned to make sure they were tumor free, they were!!!).

We began settling back in and dealing with the Autism and no-speech issues when in November of 1996 Jimmy collapsed in pain. He wouldn't bear weight onto his legs. After months of testing and long trips to the Children's Hospital, they found Jimmy had another tumor in his sacral joint in his back. It was classified benign because of its size. It was an Osteoid Osteoma.

He endured many surgeries between 1996 and 1999 from this tumor. It degenerated the surrounding bone so severely that he required a total fusion of his sacral joint. Two large pins the size of a Bic pen each, were placed permanently into his back. He can walk but tires easily. He walks with a distinct "wiggle" but it's a small price to pay for a miracle. He was diagnosed with mild Cerebral Palsy and this along with the tumor damage in his brain, has caused a central nervous disorder that is know as Dystonia. This is where his body twists into painful muscle spasms. Certain loud noises and anything really that catches him "off-guard" will trigger these spasms. If Jimmy gets sick with a common cold, or worse, the spasms return with a vengeance. The doctor has described them as being comparable to one hundred "charlie horses" going off in his body at one time. It hurts. He is presently on 4 different medications for this. He is at about 75% control but still has to be in a quiet atmosphere. We run a quiet "camp" at home.

On his good days, Jimmy likes to go out and we take him in his wheelchair. He likes the mall where he can have a slice of his favorite pizza and a famous Mrs. Fields cookie. His time limit out is about two hours. After that he wants to get home and chill out in his room. He has a swing chair which is so beautiful. It comes down from the ceiling on a chain and he just sways back and forth while he watches his TV. His teachers come to the house and teach him and he receives therapy at home also. Because he is non-verbal he receives sign language too. The sign language was coming along slowly, until I realized he was getting some of the signs, just not using them. He knows about 3 signs right now, and we encourage him to use them when he wants something. He knows "give-me" "more" and "eat" and we're working on "Thank you".

Jimmy is an awesome child and we are so blessed to be his family. He has taught us so much. Kindness and caring are always at the top of the list. Going from day to day has a new meaning to us. We do dance like no-one is watching and try to get as much out of a single day as we can. Even if it's not what others would think is fun, like a trip to the grocery store or another "chore". We make it fun because if we're out that day with Jimmy, then that means only one thing, he's having a good day! Thanks so much for visiting.