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Meet Jennifer K., Parent Mentor at Akron Children's Hospital

Jennifer K.

Jennifer's Story

My name is Jennifer, and my son Kyle was diagnosed at 6 months with Neurofibromatosis type 1 (NF1). We noticed at birth that Kyle was born with a few birth marks, a larger head, and his right leg was a little bowed. Nothing too out of the ordinary, but his pediatrician became concerned. He also noticed some small freckling under his arms and other places as he grew. At his 4-month well visit, the possibility of a diagnosis of NF had my husband and I scratching our heads in confusion saying, “What is NF? We can’t even spell that, let alone know what it is?”

We were referred to a genetic doctor at Akron Children’s, who confirmed the diagnosis of NF1 for Kyle based on the fact that he had four out of seven criteria needed to be positively diagnosed. Only two criteria are required, so the fact that he had four meant there was no question. After talking with our genetic doctor, we decided that in our case it was not necessary to pursue blood work and genetic testing to confirm further.

I will never forget the feelings of despair, confusion, anger, and sadness when the diagnosis of NF was confirmed. We cried many tears in those days, and I questioned a lot of what I did when I was pregnant with him to try and find answers as to how this could happen. Did I do something wrong? How would we care for a child with a condition that was so unpredictable? The worst thing we could’ve done was to “Google” NF from the start. We came across every horror story you can imagine; tumors that could be deadly, facial disfiguration, developmental delays. You name it, we found it.

Years later, those same emotions are still there at times, but they are much easier to manage. A huge part of it is because of the tremendous support we receive from our families and friends, and because of the wonderful care we receive from all of Kyle’s doctors and therapists at Akron Children’s. NF has become our “normal” now, and while it can still throw us some curveballs, the years of experience and education we have under our belts help us to say “we got this.”

We are involved with both The NF Network and Children’s Tumor Foundation, two outstanding organizations that are geared towards finding a cure for NF as well as educating others about NF. Our goal has always been to raise Kyle to not be afraid of his diagnosis, and that it is just a part of him—it doesn’t define him. Kyle is such a loving and active boy; he definitely does not let NF slow him down at all. He also loves being a big brother to Carter, our other son, who does not have NF1.

Some kind words I have never forgotten came from a fellow NF mom. She told me, “Let Kyle write his own story. You never hear of the ‘good’ stories of people with NF, only the bad ones. Be aware of the bad stuff, but don’t let it consume you.” I look forward to hearing your stories. As a parent mentor, I hope to be able to share the highs and lows of NF with you, to answer the questions that don’t need a doctor’s okay, and mostly to offer support in helping you write your own NF story.

Jennifer is a parent mentor for these conditions: Neurofibromatosis.

Jennifer is a mentor for these care services: Autism, Developmental Delay, Genetic Syndromes, Neurology, Orthopedics, Rehab

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Jennifer K. is a parent mentor for these conditions: Neurofibromatosis . Jennifer K. is a parent mentor for these care services: Autism, Developmental Delay, Genetic Syndromes, Neurology, Orthopedics, Rehab .

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