Living with NF and Story of Survival

by Hana Redding

"Thank you family and friends that supported me through this journey. And to those of you who have a dream that you are yet to achieve, you can do it because we are all winners in our own way."

The late President John F. Kennedy said it so eloquently in March 1962, about U.S. military personnel engaged in battle in Vietnam: “There is always inequity in life….Life is unfair.” This statesmanlike quote is profoundly relevant, to author Redding’s courage in persevering in the face of certain tragedy and despair.

Redding’s heart wrenching story opens with the author’s parents having to painfully accept the shocking diagnosis that their beloved daughter is stricken with a rare genetic disorder clinically known as Neurofibromatosis (NF)–which manifests itself as tumors (typically non-cancerous) growing in the nervous system. This disorder is accompanied with numerous bumps on the skin.

Redding’s determination to conquer her debilitating condition is relative to the unconditional love of her family, including Redding’s mom, Aunt Carol, and, of course, medically speaking–Dr. Levy–keeping in mind that the author was only a child when diagnosed with NF. Redding endures ridicule from classmates while attending John Welsh Elementary.

Meeting Jermaine, who eventually would become her husband, changes Redding’s life forever in that the couple have two children (Havana and Jalen)–and neither child develops NF, despite the high risk of Redding passing on NF to her children. However, Redding describes “one of the most devastating times in my life” when husband Jermaine dies from a severe form of lupus.

After Jermaine’s death, Redding is torn between keeping her emotions in check or reaching out to her family to ease her journey of grieving for her husband. She decides to seek the support of her family as well as a therapist. Redding relies on God and faith to get her through her battle with NF as well as Jermaine’s death. The author notes that NF affects men, women, children, the elderly, all ages, and all ethnic backgrounds.


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