We had never heard the word Neurofibromatosis before. Now we know firsthand how this disorder changes your life, because we have a 5 year old who lives with it every day.
On July 7, 2011 our son, Parker James Bell was born with a broken leg. The hospital staff were stumped, they had never seen a baby born with a broken leg. After x-rays and tests to rule out brittle bone syndrome, we were told he was fine, and it would heal. Five days later after meeting with a local orthopedist, we were told that it would not heal and was a rare condition called Congenital Pseudoarthrosis. To make matters worse we were told that there was 50% chance that it was a symptom of a much larger disorder. This was the first day we heard the word Neurofibromatosis, also known as NF. After some research, we quickly discovered how scary and diverse the symptoms are and with no effective treatments. We suddenly found ourselves feeling very alone.
We were lucky enough to find an amazing pediatric orthopedist at Scottish Rite hospital in Dallas, and we made the trek there every 3 months for the first few years of his life. At 2 1/2 year's old Parker endured surgery to reconstruct his leg including several months in a full body cast. He learned to walk for the first time just before his third birthday. Now he attends weekly physical therapy sessions to help him built core strength and balance. To add to the list of appointments is the frequent MRIs that keep a watchful eye on thickening of his optic nerve and developing spots on his brain.
With Neurofibromatosis being a progressive disorder we live in constant fear of what is lurking around the corner for him. Despite all of this, Parker is a happy kid who will talk your ear off all day. He loves everyone he meets and is an avid Star Wars fan.
Once we came to terms with our diagnosis we decided to turn our helplessness in to hope. We have become advocates and fundraisers for a cure in Houston. We've seen firsthand the importance of having the appropriate resources and knowledgeable doctors. We’ve felt the effects of having a support network of other families coping with NF. We now have hope that Parker will have effective treatments for his symptoms and that his symptoms won’t affect or define his future. We are devoted to fundraising and spreading awareness until there is a cure!
Although NF is a part of our lives, we do not let it define us! We have the support of amazing family and friends, and Parker has the most outstanding medical team helping him stay healthy and thriving. Most importantly, Parker is smart and doing great in school. He's funny and quick witted. He's caring and kind, always offering up a kind word or a friendly hello. Parker is one loved, happy and regular 5 year old kid, who just happens to have NF!
- Bethany, Keith, and Parker Bell