Meet our 2023 Jr. Chef - Serenity - Age 8
Just a few days after she was born, sweet sassy, stubborn Serenity was diagnosed with NF1. Now, at four years old, she is the fourth generation of Adairs to be affected by neurofibromatosis. Like her mom, aunt Amber and Uncle Willie, her numerous café ’au lait marks were the first indication that she had NF1. Serenity’s first MRI came before one (1) year old at Children’s Medical Center of Dallas.
Her follow up appointments have been with the NF clinic team at Children’s, where her mother, aunt Amber and Uncle Willie have all been patients. She loves making those trips because she gets to play with the doctors, who tell her how adorable she is. And, she gets to see her favorite person from the Texas NF Foundation… Cindy Hahn or Aunt Cindy, as Serenity has adopted her into the Adair family.
Neurofibromatosis affects the whole family in varying ways.
Serenity’s mom, Alisha, deals with fast growing fibromas that need constant monitoring, especially since Serenity’s birth.
Aunt Amber has been those one most affected by NF, having undergone about eighteen surgeries, ten blood transfusions and eighteen months of chemotherapy since the age of four. She currently has no vision in her left eye; scoliosis; she deals with migraines; narcolepsy and depression. Even with all that, she is a fighter. She shared her story on MTV True Life and on a local station, so people can get a glimpse of what it’s like to live with the challenges of this disorder.
Uncle Willie has also had his share of surgeries to remove fibromas, correct issues with his back due to scoliosis and there is constant monitoring of the fibromas that would require extensive surgery.
Serenity’s PaPa Willie, Sr. who inherited neurofibromatosis from his mother, diagnosed at the age of twelve, has dealt with fibromas his entire adult life. At that time there was not a lot of information about NF, so Willie and his mother often endured the looks and questions from people who did not understand. Willie was a fierce protector of his mother, and is still the family protector, especially where little Serenity is concerned.
The Adair family is very thankful for the Texas NF Foundation where information can be found on the disorder. They are also thankful for increased awareness and attention doctors are giving this disorder. And so thankful for the unbreakable bonds of friendships that have been made through four generations, in and out of hospitals; doctor offices; and events held by the Texas NF foundation. These friends understand what Serenity is up against and they will embrace her, help and encourage her when the road gets tough.
Texas Neurofibromatosis Foundation®
511 East John Carpenter Freeway, Suite 500
Office: 972-739-6086 Fax: 972-739-6087