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Our daughter Madison was diagnosed with Neurofibromatosis type 1, when she was 3 months old. We had never heard of NF before she was diagnosed, even though it is one of the most common genetic disorders there is. NF1 occurs in 1 in every 3,500 births, which is more then Cystic Fibrosis and Muscular Dystrophy combined. The hallmark of NF 1 is tumors that grow on the nerves anywhere on or in the body. NF1 may lead to blindness, deafness, brain and spinal tumors, severe disfigurements, bone abnormalities, developmental delays and learning disabilities.

Madison is the light of our life. She is a joy and an inspiration to be around, we feel so blessed by her everyday. She is our youngest of four children, the others being NF free. NF is hereditary, though about 50% of new cases are from spontaneous gene mutation - which is how Madison has NF.

Madison had congenital Pseudarthrosis, of the left tibia, which is a complication of NF. She wore a brace from 3 months old, trying to protect her thinning tibia from breaking. It broke when she was 8 months old, and did not attempt to heal. So her leg was amputated just below the knee, right after her first birthday. It was very hard in the beginning, mainly for us.  She is a real trooper. She has had two revision surgeries since then and will continue to have these surgeries until she stops growing. She has a plexiform tumor across the lower part of her back that as of now, is causing her no problems except for some pain in that area. Plexiforms are tumors that grow on the nerves and are difficult to treat. They have found that she has some “spots” on her brain that is common with NF called UBO’s. She has yearly spine and brain MRI’s to check for any changes.

NF is so variable and no two cases are just alike. There are people who have mild cases of NF and then there are cases where the person is affected severely, some even have life-threatening problems from this condition. It is overwhelming at times to even think about what category our daughter will fall in. This is why research is so important to us, to all the families who have been affected by NF, and to all the families who will be affected in the future.

Today Madison is a happy four year old. Most people do not even realize she has a disability. In our eyes it’s not a disability it’s an adventure. One that we know will be hard at times, but we will make it thru with help from people like you, who share a special place in your hearts for those affected with NF like our precious little girl Madison. She is truly amazing.