Raise you up
Karen Wylie, 42, from South Ayrshire, worried she might never see her little boy take his first steps…
Watching my three boys play a game of football in the garden, I almost had to pinch myself.
For most mums this would be nothing out of the ordinary, but for me, this moment had been a long time coming.
And as I watched Mylo, 10, and his younger twin brothers, Clay and Saul, eight, I could feel myself getting emotional.
It was May this year and just six months before, Saul – who has cerebral palsy – was confined to a wheelchair.
He couldn’t even get out of bed on his own and now there he was, running around with his two brothers.
He still needed a walker to help him, but the difference was remarkable.
My husband Stuart, 44, and I first discovered Saul had the condition when he was just 18 months old.
But before the twins arrived in 2012, we already knew there might be some complications.
‘They’re They’re suffering from twin to twin transfusion syndrome,’ the doctor told us during our 12 week scan.
It meant Clay was taking the majority of nutrients from Saul, leaving him much weaker.
After several scans, doctors advised us to terminate Saul’s life, giving Clay the best chance.
But with each passing week, Stuart and I just couldn’t do it.
‘We’ve come too far now,’ Stuart said, as we went in for a scan at 19 weeks.
‘What will be, will be.’ And thankfully, the rest of my pregnancy was fairly easy.
It was clear that Saul was much smaller than his brother, but we both clung on to hope.
Only when they finally arrived at 28 weeks, the reality started to sink in.
Throughout my pregnancy I’d let myself stay in a bit of a bubble, trying my best to avoid the inevitable. But as the boys were lifted out of my stomach I couldn’t hide my shock.
‘They’re tiny,’ I cried, as nurses whisked them both away.
Clay was just 3lbs and Saul only 1lb. All I could think to compare him to was a tiny action figure.
‘I’ve never seen anything like it,’ I cried to Stuart.
And with them both being so small, they needed to stay in hospital for treatment. While
I prayed the surgery worked
Clay was doing better and able to stay in our local hospital, Saul needed specialist care and had to be transferred to Glasgow City Hospital.
But seeing just how fragile he was, we were terrified. Visiting him for the first time, we got chatting to the family next to us.
Like Saul, their baby also needed specialist care. ‘We’ve been in here nine months,’ the mother told us. ‘Gosh,’ I replied, looking to Stuart in total disbelief. ‘How will we cope?’ I asked him as we made our way home. But before we knew it, our days were spent travelling between hospitals – all while looking after twoyear-old Mylo.
It was gruelling, but by the time the boys were three monthsold Clay was well enough to come home, leaving just Saul in the hospital.
It took a whole year to get Saul home and still he wasn’t well.. He had a stoma bag and needed oxygen to help him breathe – some days just getting him out the house was a struggle in itself.
We just thought it was all down to him being so little when he was born, but at a routine physio appointment when he was 18 months old we got a shock.
‘I’m afraid Saul has cerebral palsy,’ the doctor explained. ‘What do you mean?’ I cried. But it all seemed to add up. Saul hadn’t reached any of his milestones – he wasn’t sitting up and couldn’t even lift his head, while Clay was much further ahead.
I was devastated and as soon as I got home, I started on my own research.
I felt completely in the dark about the condition and vowed to learn as much as I could.
As the months went on, our lives revolved around hospital appointments and treatments more than ever.
Saul needed constant physio and was given botox injections to help relax his muscles.
Only, watching him go through it all was horrific.
Saul hated having the jabs
and after the second attempt, enough was enough.
‘We’re not doing that again,’ I told Stuart.
Instead, doctors were able to help him with medication, but we both knew it wouldn’t be the answer forever.
And by the time the boys were three, Clay had also been diagnosed with cerebral palsy.
But thankfully, Clay’s was far milder and for the most part, barely noticable.
We’d only picked up on it because he was falling over every now and then.
While Clay’s struggles could be overcome with a bit of physio at home and without needing any medication, Saul was unable to walk and needed a wheelchair to get around.
But in August 2016 as we headed off on a family holiday when the boys were four, I’d packed a book to read as I sat by the pool.
The author was a woman who had a child with cerebral palsy – his symptoms exactly like Saul’s.
‘I could have written this,’ I said to Stuart as I whizzed through the pages.
Barely able to hold back my tears, I read how her son was able to walk after receiving pioneering surgery in the U.S.
As soon as we got home, I contacted the author and found out as much as I could about the surgery.
‘Saul needs this,’ I said to Stuart, as I researched other children who’d also had it.
All of them hadn’t been able to walk on their own before, but now could.
I was determined for Saul to have the treatment.
The surgery and trip to America wasn’t cheap.
We needed £90,000 if we were going to help Saul, but it was just too much money.
‘What about fundraising?’ the boys nursery teacher asked one afternoon as I went to pick them up. ‘I know my daughter would love to run a half marathon.’
I was gobsmacked – so many people who didn’t even know us were keen to help out.
We set up a fundraising page – Steps for Saul – and soon people were running marathons, organising race nights and hosting coffee mornings in a bid to raise the money.
After 33 weeks and countless fundraising events, we reached the £90,000 target.
Everyone’s generosity was overwhelming and Saul was soon on the wait list for the op.
And by January this year, we made our way to St Louis Children’s Hospital in America.
But as the nurses readied Saul, then seven, for the op, I was a nervous wreck.
‘What if we’ve made the wrong call?’ I cried.
Although Saul had gone through countless surgeries, this was the first elective one. I just prayed it would work. And after two surgeries a week apart – the first on his spine and the second on his legs – Saul was soon encouraged to move about.
His movement was much better and a week later, he was discharge discharged and allowed back to the hotel with us. And as we went to the hospital every day for Saul’s physio, his progress went from strength to strength.
Just two and a half weeks after the surgery, he was walking around the hospital with the assistance of a walker.
‘I can’t believe it,’ I cried, clutching hold of my phone and pinging a video back to friends and family at home. ‘Can I run?’ Saul grinned. ‘Not yet,’ I smiled, wiping the tears from my cheeks.
It was amazing and after five weeks in America, we were able to come home.
Once back in Scotland, his walking only got better.
In fact, the surgery had changed so much for Saul.
He could now get out of bed on his own and was even managing little walks.
‘We made the right call,’ I said to Stuart as we watched him race to the end of the garden with his brothers.
Now, Saul goes to physio regularly and is even able to go cycling and swimming!
It was scary not knowing if the surgery would work, but looking back it was so worth it.
It’s given him a better quality of life and chance to do things we thought might not be possible for him.
He’s such a happy, determined little boy and I can’t wait to watch him run into the school gates soon.
Nothing will stop him now!