The story of a little boy with a debilitating genetic condition has led to a number of families going through the same thing getting in touch.
Last week, the Gazette shared the story of five-year-old Ollie Dryden, from Amble, whose mum, Amy Thompson, shared a heart-wrenching account of his diagnosis with neurofibramatosis type one (NF1).
The condition affects around one in 3,000 births and cause tumours to grow along the nerves, which can lead to a number of health issues.
In Ollie’s case, he has frequent appointments with an ophthalmologist and an oncologist for tumours affecting his optic nerves.He also works with occupational, speech and physical therapists due to developmental delays and mobility issues.
Amy wanted to share her experiences in the Gazette to raise awareness and to try to find other families experiencing the same things locally.
Both of those have been achieved with a number of parents of children with NF1 getting in touch and discussions ongoing about the setting up of a support group.
On our Facebook page, Tracey Vint, whose five-year-old son also has NF1, said: “It’s good to talk to other mums who understand the condition. We are hoping for a few more mums in the area to contact us, so we can all support each other.”
Joanne Parker-Tully wrote that they have a nine-year-old daughter with NF1, which she described as ‘a very worrying unknown condition, you and your family can quite often feel alone as others don’t understand’.
Gary York, who has a 16-year-old son with the condition, added: “A support network would be brilliant, we have felt so lonely over the last 10 years as it is something that really isn’t talked about.”
Meanwhile, Angela Morgan, from Howick, also got in touch – her 13-year-old son was diagnosed aged eight.
Others in the same boat can contact Amy on thomp firstname.lastname@example.org