An Amble mam has shared a heart-rending account of her relationship with her little boy, whose condition causes tumours to grow along his nerves.
First published on a website about reducing the stigma around disability and then on a support page for other parents in her situation, she is now sharing her story with our readers to raise awareness of the condition and to try to find others experiencing the same things locally.
Two years ago, Amy Thompson, 24, found out that her son Ollie Dryden, now five, has neurofibromatosis type one (NF1), a genetic condition affecting about one in 3,000 births, which occurred by spontaneous mutation.
No one else in the family – completed by dad Jamie Dryden, 25, and younger brother Oakley, two – has NF1.
Ollie has frequent appointments with an ophthalmologist and an oncologist for brain tumours affecting his optic nerves.
He also works with an occupational therapist, speech therapist and physical therapist due to developmental delays and mobility issues.
Amy doesn’t know if her son will need chemo or if he will lose his sight. “I don’t know what his future holds and that’s the scary part.”
Here is Amy’s story:
We were sitting in the doctor’s office. We had been referred here by my son’s allergy doctor after she discovered my son did not have a peanut allergy, but was indeed anaemic.
We had been relieved after that initial appointment, a quick course of iron medication and life would be normal again.
However, we were sitting here, unsure as to why or what doctor we were even seeing.
He came in and introduced himself as a genetic doctor and explained he believed our three-year-old son had neurofibromatosis type one. I didn’t know how to say the word, let alone what it entailed.
I was reassured our son would not be affected; we had been through three years of his life not knowing anyway, right? I was then given the instruction not to Google it. Of course I went home, Googled the diagnosis that had been thrust upon us and cried, cried and then cried some more.
I read all about the world that suddenly, and without asking, I was a part of. That’s when I realized I had known all along.
Of course, I didn’t know the full diagnosis, but I knew deep down ever since the first day my two-week-old projectile vomited. When he wouldn’t drink his milk, when he learned to walk but couldn’t chase his cousins, when he spoke funny or birth marks starting appearing all over his body – I knew that it wasn’t meant to be like this.
Now here we are, two years later, waiting for our son’s third MRI to find out if the brain tumors he has have grown. Waiting to find out if he will be started on chemotherapy to save his sight. Waiting to find out if the statement the school applied for has been a success because our son is actually affected by the neurofibromatosis.
He has tumours in his optic nerves, poor balance, poor coordination, hypermobility syndrome, poor muscle tone and suffers severe fatigue. He struggles to hold a pencil, to run, to play, to do anything his five-year-old peers do.
When I look at my precious five-year-old son, I see a little boy struggling to get his body to work for him. I see a little boy with a lifetime of battles to overcome.
For just one day, I would love to look at my little boy and once again see a little boy that falls over a lot, not the poor balance.
A little boy who struggles to run, not the hypermobility.
A little boy that likes to cuddle up and read, not the severe fatigue.
My little boy, not the NF.
What I once thought were my son’s awkward traits have been replaced by a medical diagnosis.
I know my son is kind, loving and generous. I know he loves Spider-Man and chocolate and DVD nights.
I don’t know if he will need chemo, if he will lose his sight, if he has other unknown tumors inside his body just waiting to be found.
I don’t know what his future holds and that’s the scary part.