Laura Deal, 30, from Clacton-on-Sea explains why she's making the most of every moment with her precious littl’un...
When Stanley was born in May 2012, he was crying very loudly – already making his mark!
Me and my partner Rob, 39, looked at his shock of auburn hair and smiled.
‘Moroccan sunset!’ we joked.
The minute Stanley was put in my arms, he stopped crying and I felt an instant connection.
Weighing 7lb 10oz, Stanley was home the following night.
Rob already had two boys – Robbie, 13, and Alfie,10.
I breastfed Stanley but he lost over 10 per cent of his body weight that first week.
If I gave him formula, he choked on the bottle if he was laying down, but we found a way eventually.
When Stanley was 12 weeks old, I went back to work as a teacher. Rob, who’s a firefighter, looked after Stanley on his days off, and family helped out.
Months passed and Stanley would roll over and lift his head. But then…
‘He should be crawling by now,’ I worried when Stanley was about 9 months old.
And after Stanley turned 1, Rob’s sister had concerns.
‘I think there might be something wrong,’ she said, comparing him to her son who was a similar age.
Truth was, Rob and I had pushed our concerns to the back of our minds.
But later, we faced it. So the health visitor did tests and asked questions.
‘I think he’s got floppy baby syndrome,’ she told us eventually. ‘I’ll refer you to the paediatrician.’
The following month, we were at Addenbrooke’s Hospital for tests, scans, muscle biopsies…
Six months later, we were back for a diagnosis.
‘Stanley’s got a progressive muscle-wasting disease called muscular dystrophy,’ the consultant explained.
Rob asked questions but I sat there stunned as Stanley, 2, played with some toys, totally oblivious.
He still couldn’t crawl or walk, his bowels were sluggish so he often got constipated, and he didn’t feed well – indications of weak muscles.
There are many types of MD, so we saw a professor at Great Ormond Street Hospital, who explained that Stanley had LMNA muscular dystrophy.
There are often heart problems connected to this condition – and, as muscles waste away, ligaments tighten so hands and feet become almost deformed.
Stanley would never walk and there was no cure. Then came the hardest part…
‘We don’t have anyone on our books with the condition who’s lived past 16,’ we were told.
Knowing that our boy would die before his 16th birthday was unthinkable.
‘Things might turn out OK,’ our families said, trying to be positive when we told them.
‘No, it won’t be OK!’ I snapped. ‘We’re grieving and need support.’
And we really were grieving – for all the things Stanley would never do. For the son we’d never have.
However, we had lots to do.
Stanley needed support for his neck and core, he had splints for his legs, and we raised funds to get him a lightweight manual wheelchair as the NHS ones were too heavy for him.
He started mainstream nursery that summer, too, and loved the independence.
His mind wasn’t affected, so he was a bright, happy boy.
When classmates asked why he wore splints, he had a reply.
‘I’m like a flippy floppy scarecrow,’ he’d tell them.
Stanley knew his muscles weren’t like other people’s, but as he never asked about his condition, we didn’t have to explain. But then, he’s never really known any different.
His wheelchair was basic so we started fundraising again for an electric one.
By the end of summer 2015, we had enough.
We moved out of our house so it could be adapted, and in October 2015, Stanley had a feeding tube fitted, as he was struggling to gain enough nutrients.
Last April, the house was ready – with ramps, wider doors and a bedroom downstairs.
Stanley loved being able to move around the house freely.
At Christmas, he started on a course of steroids and they’ve helped no end.
Stanley’s sitting up on his own and can stand for a few seconds with his splints – the other day he did it while holding his teacher’s hand.
‘I’m a brave boy now I can walk,’ he smiled proudly.
But he can’t be on steroids forever, which is why we make the most of every day.
Stanley’s a typical 4-year-old in many ways – loves trains, dinosaurs and chicken nuggets.
Every weekend he snuggles in bed with us, his curly hair so soft.
Day to day we’re like any family but, at quiet times, we do break down and ask, Why us? Why Stanley?
The hardest thing is knowing there’s nothing that can slow down this terrible condition.
All we can do is enjoy every moment we have with our brilliant, beautiful boy.