Ed note: During May, NF Awareness Month, we are posting stories of individuals and families living with and overcoming the challenges of NF. If you like this story please share it with your friends and family via email, Facebook, Twitter etc. Together we can do wonderful things to promote NF awareness and research, thank you for your commitment to the cause.
Our daughter, Logan was “officially diagnosed” with NF1 in August of 2010 at the age of 3. She had numerous cafe au lait spots almost from birth so we were watching her all along. In her August appointment with her wonderful neurologist, Dr. Robert Greenwood, two neurofibromas were located on each occipital nerve. They are not causing any issues currently. A baseline MRI was done in September 2010 and, as her mother, I must say it was extremely difficult seeing her go through being sedated.
As her father and I sat in the room while she had her MRI, I was in tears looking at her small body inside such a big tube. The thought of many more scans in her future was almost too much to bear. Her MRI came back normal and the plan is for her to be monitored annually by her neurologist. We are blessed to be in an area that has excellent medical care and a Neurofibromatosis Clinic [Find a Doctor].
To help us cope, our family decided to get involved in fundraising. In February 2011, with the help of dear friends and family we held a Silent Auction and 50/50 Raffle. We also participated as a team of 10, Logan’s Heroes, in the Raleigh Rocks 5K run on April 10, 2011. To date we have raised a total of $3144 for NF Research via Children’s Tumor Foundation.
We want our daughter to be able to look back one day and see that many were fighting for her before she could fight herself. She is such a blessing in our lives and has so much personality…anyone who knows her can vouch for that!
