It’s one thing to be told your child has a progressive condition, it’s another thing altogether when suddenly that condition actually starts progressing.
My son was always slow developing, he did everything in his own time.
Firstly, they told me it was global developmental delay, then they added autism, then six months later, after some seizures, they added a genetic condition called Neurofibromatosis Type 1.
He’s since added epilepsy and a growing brain tumour plus all sorts of eye conditions to his list.
I will never forget the first time I googled his genetic condition and read the word ‘progressive’. The fear, anxiety and panic that brought on was awful.
My four-year-old was like a ticking time bomb and I had no idea what his future held.
It didn’t help that he was non-verbal (and still is at ten) so he could not even communicate any new symptoms or pain.
The only consolation I had was that he was, and always will be, completely unaware of his condition and will never understand what progressive means. That protects his mind, though it doesn’t protect mine.
The thing is when you are told you or your child has a progressive condition there are so many unknowns:
When will it progress?
Will it progress?
What should I be looking out for?
Is there any treatment?
Can I stop it progressing?
Why us?
Regardless of this my son started school. He seemed stable. He never complained about any pain (or was he unable to?)
While his development was very very slow, he was making tentative progress in his special needs school.
His speech, however, wasn’t progressing and with eye sight difficulties and complex autism I finally managed to convince a neurologist to arrange an MRI for my son as his genetic condition causes tumours to grow on nerves and I wanted some reassurance that all was well.
I knew MRI’s cost money and I knew that medical staff needed a clear clinical need especially as the only way it could be carried out was via general anaesthetic.
In the end the word ‘progressive’ was the deciding factor in getting that scan.
That scan brought news no-one was expecting.
Isaac had a tumour on his optic nerve as well as complex eye conditions in his other eye meaning he had no sight in one eye and a tumour on the other!
What should have been a routine scan needed repeated every six months, again because of the concerns of a progressive condition.
Since then they have found more and more issues.
The latest scan has brought the worst news to date: my non-verbal ten-year-old has a growing brain tumour that requires a brain tumour biopsy and possibly chemotherapy.
We are now living in a new realm of knowing that my son’s progressive condition is now actually progressing and that’s very difficult and stressful.
When I found out about my son’s NF1 when he was four, he was physically well. He was having mild seizures and that was it.
Now he is on strong anticonvulsant medication twice a day and often still has breakthrough seizures.
He needs brain surgery and invasive and painful treatment to keep him well and yesterday he was measured for a wheelchair.
I don’t know what the future holds. No-one does. He could remain stable now for the rest of his life or…well let’s not go there.
Hearing my son had a progressive condition was heart breaking. Dealing with it progressing is even more heart breaking.