On borrowed time
When Cheryl Houghton’s little boy’s sight started to fail, they had no idea what it would lead to…
Walking round the supermarket with my son, Harry, I placed food into our trolley. I don’t know what it was – it could have been as simple as his shoes being uncomfortable – but something triggered Harry and he started having a tantrum.
He screamed, kicked, lashed out, pulled my hair, all while passers-by stared judgementally. Their looks suggested I couldn’t control my son, but they didn’t understand…
‘Give him a smack,’ a bystander tutted. Usually, I’d ignore people. But sometimes, I couldn’t hold my tongue.
‘Our son has Juvenile Batten Disease. Look up what he has to cope with, then see if you still want to judge,’ I said, furiously.
Gradually, the tension eased in Harry. I wasn’t cross, or angry with him.
He’d had so much to deal with in his short life…
Harry was born in November 2012, four years after my husband, Ant, and I had met. I came from a big family and had always wanted children of my own. We adored our boy, proud of every milestone, always sharing updates with our families.
But when Harry was two, he was nestled on my lap as I read him a book. As I turned the pages, he didn’t seem to notice the cute, animal pictures... until I held the book right in front of his eyes.
‘Could he be short-sighted?’ I said to Ant, now 33.
‘He does hold his toys very close to his face,’ he said.
I raised Harry’s eyesight with our health visitor and GP, several times. I was made to feel like an over-anxious firsttime mum. But as time went by, we noticed Harry having trouble with simple things like picking up pencils or finding my hand when I held it out to him.
Despite extensive tests with various opticians, nobody else thought there was anything wrong.
Then, in September 2017, Harry started school. Until then, he’d had no behaviour issues. But he began having serious meltdowns.
When he was upset, he would become aggressive, scratching other children.
We were desperately worried. I’d worked at a nursery in the past and had seen kids with autism and ADHD display what seemed to me to be similar behaviour. But every expert we saw insisted that our boy didn’t fit either condition.
A year later, another set of tests revealed Harry had lost most of his sight. He could make out vague colours and shapes but was officially classified as blind.
It was a huge blow. Harry was so determined – we knew with our guidance, he would find his way in the world. He’d feel his way around unfamiliar places until he knew where furniture was and we learned not to move anything in our home so that he didn’t unexpectedly walk into things.
But we still didn’t know what had caused the sightloss. Thankfully, Harry was given a one-to-one classroom assistant, to help with his education, and started learning braille.
We took him to a child psychologist. She observed him, offered up behavioural strategies to help with the tantrums, but she – like us – suspected there was
something else going on.
Eventually, in November 2019, we went to Great Ormond Street Hospital for tests. We made a day of it after, as Harry loved London, especially Buckingham Palace.
A month later, Ant and
I sat hand-in-hand in the consultant’s room. Nothing could have prepared us…
‘Harry has Juvenile Batten Disease, a rare and degenerative disorder of the nervous system. It will affect him physically and mentally. It can’t be cured and will eventually end his life,’ the doctor said.
Ant and I were in shock. How could this be happening? Our son had only just turned seven…
We’d suspected something was wrong, but we never expected a diagnosis that would cut our boy’s life short.
We missed three trains home to Huntingdon because we couldn’t stop crying.
The minute I was back with Harry, I scooped him into my arms and never wanted to let him go.
Telling our family was one of the hardest things we’ve ever had to do.
We agreed that we would just take one day at a time and try not to worry about the future.
In time we learnt that JBD would cause Harry to lose his existing mobility, speech and intellect. He was unlikely to live beyond the age of 20. Unthinkable.
A week later was Christmas Day. We dried our tears and did our best to give Harry a lovely day with us and his grandparents. When he didn’t want to change out of his pyjamas that morning, I didn’t try to persuade him like I usually would.
‘Stay in your jammies all day if you want,’ I smiled. Of course, he was oblivious, and had a great day, surrounded by the people he loved most.
Since then, every month seems to bring a small worsening in Harry’s abilities. ‘Life is precious, so make each day count and never judge others – you have no idea what they’re going through.’
He now walks with a cane and he tires easily. His shortterm memory is affected – sometimes he’ll mention things from a few years ago, but he can’t remember what happened hours earlier.
Most of the time, though, he’s a happy, contented boy who loves bike rides where he sits in a trailer behind us, or playing with his Paw Patrol characters and building Lego models.
And one thing that never changes is how much he is loved by family and friends. We’d have liked more children, but we’ve decided that because of Harry’s health, we want to give him 100 per cent of our focus and attention.
‘ We’ll make the most of the time we have together, however long that is,’ Ant always says.
We take every opportunity for Harry to have fun, as he seems to remember the happy things.
As part of his condition, our boy’s occasional meltdowns and sight-loss are here to stay. It’s tough when we’re out, and others stare or pass comment.
Now, at 37, Ant and I are doing what we can to raise more awareness about conditions like Harry’s.
We wear the sunflower lanyard in public places, as a sign that our son has a hidden disability. Hopefully then, people will understand our son isn’t a naughty child.
‘If there’s one thing I’ve learned’
For more information, see bdfa-uk.org.uk