Mother of boy with '˜cruel' condition inspired to raise funds
The mother of a little boy with a debilitating genetic condition has helped organise a series of fund-raising events for a charity which supports those living with the '˜cruel' illness.
Amy Dryden, from Amble, admits her family has ‘a lifetime of worry’ after six-year-old son Ollie was diagnosed with neurofibramatosis type one (NF1) at the age of four.
The condition affects around one in 3,000 births and causes tumours to grow along the nerves, which can lead to a number of health issues, such as blindness and deafness.
Ollie endures a constant daily battle. He has learning difficulties, mobility issues, brain tumours located on each optic nerve, low muscle tone, poor speech and balance problems. He suffers daily pain, fatigue and bad headaches.
Along the way, The Neuro Foundation has given the brave youngster and his family much-needed support.
So, to give something back to the charity, Amy and her loved ones have organised a series of fund-raising events in May, to take place during NF Awareness Month.
These include a sponsored walk from Boulmer to Amble on Saturday, May 13, starting at 9.30am, and a coffee morning at Amble’s Radcliffe Club on Saturday, May 20, from 10.30am.
Ollie’s school, Amble Links, is also supporting the cause by holding a pyjama day.
Amy, 26, said: “Ollie was diagnosed when he was four. We went to the hospital with a suspected nut allergy and came out with a diagnosis that we couldn’t pronounce and a lifetime of worry.
“As a family the news hit us hard. NF is a progressive condition, so Ollie won’t ever get better, but unfortunately he can get a whole lot worse.
“He is going through a bit of a difficult time at the minute. He is struggling with pain in his joints and his vision is starting to deteriorate because of the tumours.
“He is having an eye examination in May and they might have to start chemotherapy.
“It is a cruel condition, but Ollie is the kindest, most caring little boy. He strives to make people laugh and will help anyone.
“The Neuro Foundation helps families like ours. It funds NF specialist nurses and Ollie’s nurse has helped us a lot in the last few years.
“With May being NF Awareness Month, my family, friends and I are hoping not only to raise awareness, but also funds for this very worthy charity.”