Condition: Neurofibromatosis type 1 (NF1)
City, State: Medford, OR
Club: Crater High School Sparrow Club Service Hours:
Date Adopted: 12/11/2013
Madison is a beautiful 4-year-old girl who loves animals and is a tomboy at heart. Madison, known as “Maddie May” by family and friends, enjoys playing outside and loves to try new things, in spite of living with a condition that greatly impairs her physical abilities.
Maddie lives with neurofibromatosis type 1 (NF1) a condition that causes tumors to grow on nerves anywhere throughout the body. These tumors can appear as raised bumps on the skin or they can form under the skin or deeper within the body.
Maddie has several plexiform neurofibromas (one type of NF tumor), the most serious being a large tumor starting at her lower back and running all the way down her left leg to the tips of her toes. This tumor has caused her left leg to grow faster than her right leg, resulting in a noticeable length discrepancy. Maddie’s left leg appears very swollen and is very sensitive to touch, which often limits her clothing choices. To date, Maddie has endured three surgeries on her legs, the most recent one in June of 2013.
In addition, Maddie also has a tumor on her optic nerve (optic glioma) that is causing her vision to decline. So far, all of Maddie’s tumors are benign, but there is a danger of them becoming malignant. As Maddie grows, her condition could cause increased physical impairment.
NF1 is more common than one might think, with 1 in 3000 people affected worldwide. In addition, not everybody with NF will necessarily manifest symptoms. Maddie and her family are very thankful for the support of Sparrow Clubs and hope to use this experience to educate people and increase public awareness of this debilitating condition.
Maddie will be adopted as a Sparrow to Crater High School. Students will work hard to raise money for Maddie through community service and fundraising projects. Funds raised for Maddie will help cover frequent travel expenses, adaptive equipment, and general expenses during this time of need.
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