I’M FINALLY WALKING … JUST LIKE MY TWIN BROTHER!
Crouching down, I offered a smile to my five-year-old twins.
‘What would you like for your birthday, boys?’ I asked.
Jacob bit his lip in thought. The answer was easy for his identical brother Jordan though.
“I’d like Jacob to be able to walk like me!” he said.
As they both looked at me with their big, blue eyes, I crumbled inside.
It’s something they’d asked for time and time again. And it just wasn’t possible.
To look at Jacob and Jordan it’s hard to tell them apart, but there is one striking difference – Jacob has cerebral palsy.
The twins were born prematurely in December 2008 and taken straight to intensive care.
For two anxious months they were at Oxford’s John Radcliffe Hospital.
Then, the day before I could take them home, routine checks revealed cysts on both sides of Jacob’s brain.
It wasn’t until he was six months old that he was officially diagnosed. And the doctor’s words were like a sledgehammer.
‘What does that mean for Jacob? Will he be okay?’ I stuttered.
The doctor took a deep breath.
‘It’s hard to say with him being so young, but he may never walk, he may never talk …’
The list went on. It was a lot to take in.
Back home in Oxford we had to sit and wait.
A flash of hope came when the twins learnt to smile at the same time.
But then Jordan started to sit up. Jacob didn’t. And then Jordan started to crawl. Again, Jacob didn’t.
Every milestone we celebrated with Jordan was tinged with sadness because Jacob just lay there in discomfort.
As the twins grew, the extent of Jacob’s cerebral palsy became clear.
He was okay mentally, but found it difficult to crawl, walk or even sit without being in pain.
Physiotherapy became part of Jacob’s life. And it was here, when Jacob was two, that we met little Grace.
Grace was also a twin with cerebral palsy, but there was something different about her – she could walk with the aid of a walker.
‘She had an operation in America,’ her mum, Mandy, explained.
‘That’s allowed her to walk?’ I asked, amazed.
‘Yes,’ she beamed. ‘It’s called SDR. You should look into it.’
My heart started to pound. Why hadn’t anyone told me about this before?
After quizzing Mandy further, I got home and turned to Google.
SDR, or Selective Dorsal Rhizotomy, involves cutting damaged nerve fibres in the spinal cord, but isn’t widely available in the UK.
I found a Facebook page littered with information and started to speak to other parents.
One hospital came up time and time again – St. Louis Children’s Hospital in Missouri.
The surgeon there, Dr Parks, was a celebrity to all of the thankful parents who had crossed his path.
After getting in touch, we sent scans and X-rays to see if Jacob was suitable. Then, three weeks later, a letter arrived in the post.
We think Jacob would be an excellent candidate …
My eyes filled with tears. And then, after finishing the letter, the tears wouldn’t stop falling.
They predicted Jordan would be able to take independent steps in the future!
There was just one more hurdle standing in our way – the operation was £40,000 and we’d need more for intensive physio. We were looking at £65,000.
‘How on earth are we going to get that money?’ I asked my partner of three years, Scott Cook, 32.
‘Don’t worry,’ he replied. ‘I don’t know how we’re going to do it, but we will.’
In January 2013 we started fundraising. We started small with bake sales and supermarket collections.
My best friend and the twins’ godmother, Emily Richens, 25, was a huge help. She came to stay with me while Scott was doing protection work in Iraq.
Night after night we’d stay up until the early hours planning new ideas.
‘What about a skydive!’ Emily announced one evening.
‘Are you joking?’ I laughed.
‘I’m serious. I’d do it,’ she replied.
Sure enough, Emily jumped from 13,000ft with nine other friends. And all for Jacob.
The fundraising snowballed and, incredibly, after just five months we reached our target. The support was overwhelming.
With the operation confirmed, I sat Jacob down.
‘We’re going to America to make your legs feel better,’ I said
I was met with a blank face. I don’t think he understood what America was.
‘We’re going to go on an airplane,’ I said instead.
‘Wow!’ he shouted, his face lighting up.
He understood that!
Later on I told him about the operation. It didn’t seem to bother him at all.
And before we knew it, in June 2013, we were flying to America.
Me, Scott and the twins were joined by the twins’ dad, 27-year-old Ben Wright, and his mum, Lesley.
My mum and step-dad, Rebecca and Michael Berry, were set to join us later on.
After checking into our hotel and meeting Dr Parks it was soon time for Jacob’s operation.
We all sat nervously in the waiting room. Then, after four hours, Dr Parks appeared.
‘Jacob’s done really well. He’s fine,’ he said.
‘Can we see him?’ I asked, fighting back tears.
‘Of course. He’s down in recovery now,’ he replied.
Jacob was asleep when I reached his bedside, but woke up after 20 minutes.
He was still sleepy, but his flickering smile told me he was fine.
It wasn’t quite the end of Jacob’s treatment though. Just two weeks later, still at St. Louis, they cut muscles in his eyes to correct a squint.
Jacob was scared when he woke up – he couldn’t see – but he calmed down when told it was normal. The same couldn’t be said for Jordan.
‘Why does Jacob look like a robot, mummy?’ he asked, squirming at the sight of Jacob’s sore, red eyes.
‘Jacob’s fine,’ I soothed. ‘The doctors have just been making his eyes better. The red will go.
The following day, Jacob was able to look down without seeing double for the first time.
But that was just the beginning. The same day, with a huge grin on his face, Jacob used a walker to to follow Jordan down the hotel corridor.
My little boy was walking!
And, in physio, he was able to stand with sticks.
After five weeks in America, we returned to the UK. Since then, Jacob’s mobility has slowly improved.
In September 2013 the twins started school. They love it, and it’s been another push for Jacob – he’s determined to walk out like everyone else.
It’s even predicted that he will be soon be walking independently around the house.
Thanks to the kindness of others, and the incredible team at St. Louis, Jacob is taking steps towards a bright future.
And now they’re finally thinking of other things I can get them for their birthday.
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