Meet Kaitlyn

Kaitlyn is a 7 year old fighting neurofibromatosis type 1. She was diagnosed with NF1 at six months of age. She was a full term pregnancy with little complications. At birth she was put into ICU for a few hours due to breathing difficulty. Immediately during first days, Kaitlyn was very fussy. It became clear that she was having bowel problems. She was taken to doctors and treated for stomach issues. She was then sent to genetics doctor because of a spot on her stomach. More and more spots started to appear as she got older. It was quickly suspected that she had NF. A DNA blood test confirmed that she indeed had neurofibromatosis. A bone scan was done and revealed a lesion on the left side of skull between her eye and ear. She then started getting MRIs done regularly. Each MRI showed more lesions. As of 2010 she has 5 lesions inside the brain, one outside of skull, and one in left hip. So far they are not causing extreme problems. The lesions in her brain are pushing on particular nerves causing uncontrolled emotions, difficulty understanding, memory problems, etc. In the toddler years she would wake up in the middle of night screaming in terror. By this time she had a ENT, eye specialist, neurologist, and genetics specialist in addition to her pediatrician. The neurologist determined that she was having night terrors after seizures. This meant she was having seizures daily. She was then diagnosed with Epilepsy. The team of doctors work together to come up with the best treatments for her. The genetics specialist started seeing the patterns of things in Kaitlyn compared to her other NF patients. The spots (if you have 5 over 1/2 inch big, you most likely have NF...Kaitlyn has hundreds), freckling under arm pits, hair on lower back, stomach issues, learning disabilities, and posture issues in shoulders. Kaitlyn started therapies before she was one year of age. During age 2 to 3 years of age she attended a local special needs school, that specialized in learnign disabilities in children up to age 3. Now in school she has occupational therapy, physical therapy, speech therapy, and resource. She is only in the classroom with peers of the same age about 90 minutes a day. The members of her IEP team work together to get her the best education possible. She will always be behind in learning. She can learn, but it has to be done through repetition and a lot of extra time. She has to work harder then other kids of her age. As of 2010, she is about a year behind her peer in mental capabilities. She is a fighter and a trooper. Her entire life has been visiting doctors and therapist. She knows that her spots (Katy-bug spots) make her different then other people. Her spots are what make her special!