“I am 13 years old, and when I was 8 I was diagnosed with Neurofibromatosis,” writes Ella, who celebrates her 14th birthday this month. “This has given me Scoliosis, three brain tumours, …I am scared what the future holds for me, but I told my support worker that I can’t change it, so I will have to roll with it and do my best to have a good life.”
Ella’s mother Diane explains, “During this period I can only say we were in a very dark place. We were passed onto Carolyn, a Specialist Neurofibromatosis Nurse, with The Neuro Foundation.
Reflecting on the impact of Carolyn’s support, Diane says: “Of course, the diagnosis hasn’t changed, but Carolyn has been able to be positive and prove that those with Neurofibromatosis can have a fulfilling life with the right care and support. She’s been into every school Ella has attended. Ella is now excelling at school, and I know, if in doubt, I can rely on Carolyn to point me in the right direction. I wish everyone with Neurofibromatosis could have a ‘Carolyn’!”
You can help support The Neuro Foundation’s work to help people like Ella by signing up to an event like the Westminster 10k, Prudential RideLondon or Serpentine Swim!
For more information visit nfauk.org.
Ella Tells Her Neurofibromatosis Story
Will You Support Our Work?
People turns to WhatsOn to understand what's goingOn? We have been empowering through hope & understanding for the last forty years. We’re an independent social enterprise & our journalism is powered by our supporters. Financial contributions from our readers allows us to keep our journalism free for all & to change the world for better. Please support us, with your donation - no matter how small. Your donation makes a real difference, it empowers our activist & academy, and engages wider community groups, & universities - connecting more people. WhatsOn is a change maker, let’s get our future back together!
