Condition: Neurofibromatosis Type 1
City, State: Medford, OR
Club: Lone Pine Elementary School Sparrow Club Service Hours:
Date Adopted: 10/12/2017
Madison is a beautiful 8-year-old girl who loves horses, singing, burritos, and aspires to be a motivational speaker one day. Her hope is to inspire others who face difficult challenges in their lives, and to give them hope.
Madison lives with neurofibromatosis type 1 (NF1), a condition that causes tumors to grow on nerves anywhere throughout her body. These tumors can appear as raised bumps on the skin or they can form under the skin, or even grow deeper within the body.
Madison 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. To date, this sweet young lady has endured many surgeries, and is currently on a trial chemo medication for the plexiform tumor. The medication has helped significantly in reducing the growth and pain from the tumor. This particular tumor is the main medical concern she faces. This tumor threatens her ability to walk, and it has the capability of becoming cancerous.
In addition, Madison also has two brain tumors, one of which is on her optic nerve (optic glioma) that has remained stable. Doctors continue to monitor this tumor with regular eye examinations and full body MRI’s.
This sweet girl lives with nerve pain on a daily basis. She also struggles to find shoes that do not torment her with pain caused from a tumor at the bottom of her left leg.
This lovely young third grader receives treatment from many doctors. She currently flies to Maryland every four months, and has many visits to Portland doctors as well. Her medical condition requires her to be absent from her peers and school often.
NF1 is more common that one might think, with 1 in 3000 people affected worldwide. In addition, not everybody with NF will necessarily manifest symptoms. Madison 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.
Madison will be adopted as a Sparrow to Lone Pine Elementary School. Students at Lone Pine will work hard to raise money for Madison through sponsored community service and fundraising projects.