Get to Know NF

by Melissa Brunner

Today, May 17, is World NF Awareness Day. I've written about neurofibromatosis before and figured today was a good day to revisit the topic and give you an update on the reason it interests me - my nephew Owen.

NF is a genetic disorder in which tumors form on the nerves throughout the body. Think about how many nerves are in your body and you can begin to imagine the various ways the disease might affect a person. Owen was diagnosed before his first birthday and, at first, it was only visible as tannish "cafe au lait" patches over his torso.  We thought how lucky that Owen would not have to cope with the very visible, disfiguring tumors some kids must. Well, just because you can't see them doesn't make them any easier. At age four, Owen develped his first tumor. It was on his optic nerve and causing fluid that was putting pressure on his pituitary gland. He had surgery to put in a shunt and underwent a round of chemo requiring weekly trips to the hospital, one day for blood work, the next for his treatment. Those treatments finished and his tumor declared stable, only, two months later, for another tumor to show up on his thalamus. Two more rounds of chemo followed. Why couldn't they just do some targeted radiation and zap them out was one of my questions. I'm told they prefer not to take that risk because, as it stands, the tumors are not malignant - but radiation could make them become malignant and you've got more problems to deal with.

Owen is now 9-years old. He plays soccer and basketball and is involved with Boy Scouts and the Boys and Girls Club. This winter, Owen suffered a major seizure. Scans showed the side of his brain without the shunt had been collecting fluid, so Owen underwent another brain surgery to give the fluid somewhere to go. The good news is that, despite the prolonged duration of the seizure, Owen's brain shows no permanent damage, but it's still not clear if the fluid is what caused it to happen. There are no signs of a new tumor, which also is good news. Everyone's keeping a close eye on him, while he does his normal third grade things! You might also spot my husband and I wearing blue and green "Solve the Puzzle" CTF bracelets - Doug hasn't taken his off for about three years now.

That's Owen's story with NF. There are so many more. One of Owen's friends, for example, had a tumor that became so wrapped up in the muscles and nerves of her leg that it had to be amputated below the knee. Other kids have become deaf or blind; in others, it causes the disfigurement that has some referring to it as "elephant man's disease."

NF will get some national attention on ESPN tonight (Tuesday). Cleveland Cavaliers owner Dan Gilbert will be represented by his son Nick at the NBA Draft. Nick has NF.

"We talk a lot about heroes in sports but sometimes we overlook the heroes that are in front of us every day. Nick Gilbert was born with NF more than 14 years ago. Despite enduring brain surgery, the loss of vision in one of his eyes, four long rounds of chemo therapy and countless visits and time in doctors offices and hospitals, he has emerged as the happiest and most optimistic person I know. Nick has never complained a single time about the bad card he was dealt, and instead, chooses to focus on all that is good and exciting around him. He is an example of perseverance, determination and life the way it should be lived. Nick is my personal hero. BTW, the kid is also quite lucky, which Cavs fans should take solace in, since he is representing us in the lottery on Tuesday evening!" Dan Gilbert said.

To honor World NF Awareness Day, Dan Gilbert has agreed to match any donations made through this page - http://ctf.kintera.org/pages/cavsnick - or by texting "CTF" to 20222 (to make a $10 donation) to raise funds for NF research.

To learn more about NF, you may visit the Children's Tumor Foundation web site, www.ctf.org.




 

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