A Little Boy, A Lot of Unknowns
Our little boy hasn't got a diagnosis yet as we're still going through genetic testing. We've had a few possible diagnoses, like hypomyelinating leukodystrophy and Allen Herndon Dudley syndrome.
So we're struggling to find the reason for how our son is the way he is, and to know what the future holds for him.
He is nearly 3.
- can't sit by himself
- walk
- crawl
- talk
or communicate at all besides giggles and crying.
We try our best with him with the therapies and information we get, but it is a struggle some days for both of us.
Small Moments of Help
He goes to nursery for a few hours a week, which helps, and is in the middle of assessment for his EHCP, which will hopefully help if it gets through the process.
Family try their best, but they have their own physical limitations and families of their own to battle with.
His Light
He is a lovely, happy boy most of the time, and every smile or giggle makes all the bad times — either hospital visits or sick days with him — seem to fade away.
Big Questions We Carry
One of the main struggles at the moment is:
If we have another one, would we give birth to another with his limitations? Or would they not have the genetic disorder and be as any other baby that doesn't have these problems he's facing?
Is it fair on them and him if we have another?
His Joy in Others
But he loves being around kids himself, as he seems to light up when he's at nursery or around his cousins — he loves to watch other kids running and screaming and playing.
The Professionals
We haven't had a bad word to say about his health profession, as we believe they're doing all they can with the information they've got.
Maybe if there were more research into what he has, it would be better.
The Unfolding
His nursery has struggled at times, which has led to frustration over the time he started, as we thought he was a healthy little boy who was just a little delayed, till we had his first MRI scan at 1 year old, and then it's all unfolded since then.
One Day at a Time
We have a million and one questions about him and his life in the future, but no one has all the answers —
So we take it one day at a time and love him while we can.