Sonia-Mae is a 15-year-old KIF1A superhero from England. Her wish is to one day walk unaided again. Her family says Sonia-Mae “knows this is a huge challenge and is embracing life in her wheelchair as she rebuilds the strength in her legs.”
A Message from Sonia-Mae’s Family:
Sonia-Mae is a happy, bubbly, chatty, cheeky teenager who loves singing and playing pranks on family and friends. She is a very friendly girl who strives to make everyone around her happy.
Sonia-Mae loves school and enjoys trips to the theatre or bowling with her friends. She is a big fan of musicals and anything Disney and spends most of her time singing or listening to music. One Direction, Justin Bieber and Annie the musical are always playing in our house. She enjoys spending time with family and doesn’t let her physical disabilities stop her from enjoying birthday celebrations or family days out.
Sonia-Mae was born with a hearing impairment and it quickly became clear that she also had physical difficulties with both legs. At 18 months old, she was diagnosed with Cerebral Palsy and showed huge determination during her physio sessions. She quickly learned to walk with her Kaye walker and with time and extra interventions walked unaided at 4 years of age. Shortly after this she started falling and showed great strength as she underwent a series of surgeries to straighten her hips, legs, feet and more recently her spine. Sadly, each surgery brought unforeseen complications and further set backs, but Sonia-Mae’s determination and courage has shone through and she has relearned to walk with her frame 3 times.
Sonia-Mae has been part of the Genomes 100,000 project for many years and in 2019 we received a diagnosis of KIF1A and recessive mutations on PTPRQ, which relate to her deafness. This diagnosis has confirmed that Sonia-Mae’s condition is degenerative but until any new treatments are found, life continues as before.
Although awaiting further spinal surgery Sonia-Mae’s wish is to one day walk unaided again. She knows this is a huge challenge and is embracing life in her wheelchair as she rebuilds the strength in her legs. Earlier this year she completed the Superhero Winter Wonder Wheels 5 km challenge and received the Junior Endeavor award for Boccia at her sports club ‘Sportsable’. Sonia-Mae is currently walking 15 minutes each day with her frame as part of the Arctic One ‘Forward Motion’ spring challenge.
Sonia-Mae is our Superhero who constantly displays strength, courage and determination that amazes us. She brings huge joy to many people’s lives and brightens even the toughest day.
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