Why We Walk ~ Steps2Cure NF ~ Saturday, May 11th

By Mary-Kate and Mike Reid, Team Fiona’s Fans

Fiona Reid – Courtesy image (c) 2019 all rights reserved

We walk for our 5-year-old daughter, Fiona Reid. Fiona was diagnosed at 19 months with neurofibromatosis type 1 (NF1). NF is a genetic disorder associated with the chronic growth of tumors along nerves throughout the body. It can be associated with bone abnormalities and learning disabilities as well.

Fiona’s symptoms at diagnosis were tibial dysplasia in both legs, which means her legs can easily fracture or break. Fiona has to wear braces on her legs to protect her bones. If her legs break, there is a good chance they will never heal, resulting in possible amputation. Fiona also has a large growth in her chest that recently started growing. She undergoes MRI’s several times a year to monitor this growth and to look for new growths.  The growth started to cause damage to her spine. When wearing a brace didn’t help, Fiona underwent spinal surgery in April to correct it.

The hardest part of this medical condition is the uncertainty – knowing that Fiona’s life can change without warning.  We try to live in the moment and know that each day Fiona is feeling healthy is truly a gift.

Fiona never complains about her medical condition, and she truly lives life to the fullest. She loves going to school every day, singing, and playing doctor. She adores her two sisters and hopes to be a pastry chef and a mom when she grows up.

There is currently no cure for NF. Fiona will need to be continually monitored for tumor growths and see NF specialists throughout her life. Continued progress in the research of NF is necessary, and awareness is key in improving and sustaining research.

We walk for Fiona, and we walk for all of those facing the challenges of NF, patients and families alike. We walk in support of the medical professionals who treat this condition, and we walk to raise NF awareness. We walk because we will never give up hope.

Donations to the Fiona’s Fans team can be made at https://www.firstgiving.com/team/389728

Keep our journalism strong! Support The Citizen Journalism Fund today. Contact The Bedford Citizen: editor@thebedfordcitizen.org or 781-325-8606

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