The three-year-old Borehamwood boy who dreams of being able to walk – Hertfordshire Mercury

Posted: Published on March 26th, 2020

This post was added by Alex Diaz-Granados

Three-year-old Ryley Keys loves football, and loves the Avengers, just like any little boy.

But, unlike a lot of children, he has one main dream - he wants to be able to walk.

The Borehamwood boy, who goes to St Johns Nursery in Radlett, has already proved to everyone just how much of a fighter and an inspiration he is.

After being born prematurely at 29 weeks, and having to go through a crucial life-threatening operation, the three-year-old has been unable to walk since he was diagnosed with Spastic Diplegia Cerebral Palsy.

That condition has left him in a wheelchair and all he wants to be able to do is walk.

His mum Sarah thought it would be smooth sailing when she was pregnant with Ryley - much like her pregnancies with her other two daughters, Daisy, 10 and Scarlett, five.

But at her 20-week scan everything changed when doctors identified problems with his heart.

Before he was even born, Ryley was diagnosed with Pulmonary Stenosis - a congenital heart defect which meant that he would need surgery as soon as he was born.

It was very scary and such an intense pregnancy from the moment those words left the doctor's mouth," said Sarah.

"As if it wasnt enough of a shock, I went into labour at 29 weeks.

At the time, Sarah was in Southend with her two daughters and started to get contractions. Hours later, she found herself on a hospital bed in Barnet Hospital giving birth.

Understandably, Sarah, and Ryleys dad Adam, were both filled with anxiety but that all suddenly changed as soon as Ryley was born.

I remember looking at him and all my worries going away," Sarah recalled.

"But then it started to become real.

Ryley was born so prematurely that he weighed just under three pounds.

As a result he was too weak and small to be put forward for the vital operation that he so desperately needed.

Ryley ended up staying in hospital for 11 weeks until he hit full term before he was then admitted straight into Great Ormond Street Hospital.

There he could have surgery to open up one of the valves in his heart.

It was just so heartbreaking to watch," Sarah said.

"He was still so young and had never even left the hospital. He then had to go into an operation, which was ultimately life-threatening.

As a parent, you never want to see your child go through that."

After recovering from the operation, Sarah explained her mothers instinct kicked in when she noticed her son wasnt developing as he should have been.

He wouldnt do normal things a child that age would do, like rolling over and showing any real signs of strength," she continued.

"I knew something wasnt right, but after several trips and checkups at the doctors, nothing was getting picked up.

My mothers instinct kicked in and I pushed for a referral. It was there when he was diagnosed with cerebral palsy and we found out he would never be able to walk again.

From that moment on, it has been nothing short of heartbreaking, chaotic and hard.

After looking into possible operations to improve Ryleys quality of life, Sarah stumbled upon Selective Dorsal Rhizotomy Surgery.

Despite the surgery being available on the NHS, Ryley wasnt and still isnt a candidate, so Sarah and Adam put him forward for the operation in America.

Selective Dorsal Rhizotomy Surgery (SDR) is an operation commissioned by NHS England for the treatment of spasticity in Cerebral Palsy in children aged three to nine years old.

The operation is used to reduce muscle stiffness in Cerebral Palsy. According to the NHS, Cerebral Palsy is a descriptive term for a problem of motor control caused by an irreversible structural difference or damage to the brain that happens before birth, around the time of birth or in the first two years of life.

SDR surgery involves cutting nerves in the lower spine that are responsible for muscle stiffness in order to improve mobility in the patient and ease muscle stiffness.

The treatment also includes an intense period of physiotherapy.

For Ryley to have the operation, the intense physiotherapy and all the necessary equipment needed to support him post-surgery, it would cost the family 75,000.

It was such a big decision to make due to the operation's importance and high risk.

Immediately after the operation, doctors have to hit the ground running, according to his mum, and have to make sure Ryley lies down flat for 48 hours and then they have to train his brain how to walk.

We looked into him having the treatment in America, put him forward for it and he was accepted," Sarah explained.

"And then it sunk in how much it would cost.

We knew we had to do it because it could give him the life he hasnt had before. If successful, it would dramatically change his life.

It would give him his independence back. He would be able to walk without being in a walking frame and not having to stop every five minutes because his legs cant keep himself up.

He could be able to play football with his dad in the garden, play with his friends in the playground at school and could do anything he wanted with his sisters who he loves to pieces.

But at the same time, were just a normal family. We didnt, and still dont, have 75,000 sitting there.

"We have a mortgage to pay and have three children to feed, so we created a fundraising page.

The family are close to their 75,000 target, but they're still not there yet.

Within a year of launching the JustGiving page, they have managed to raise over 53,000, which has left them around 22,000 off their target.

An emotional Sarah said: We are all just blown away by it.

"To raise 53,000 is incredible and the support we have had from family, friends and even strangers, has spurred us on and given us everything we have needed as a family.

"But at the same time we know it still isn't enough.

As a parent, watching your child - who you brought into the world - sit there and get frustrated and angry because he cant walk, because he cant lift himself onto the sofa, because he cant do the things that his sisters and friends are doing, is heartbreaking.

He is like any other three-year-old. He loves Avengers, Disney films, football, playing with his friends and sisters but unfortunately he just needs help.

The effect it's had on us all as we watch him grow up is really hard, but it has also made us even more determined to get all the money and change his life.

The Keys family have held a number of different fundraising events, which has helped them get even closer to their goal.

Tying in some of Ryleys main passions and interests, Sarah and Adam, with the help of some of their closest friends, organised a five-a-side football tournament at Borehamwood Football Club, which raised 3,000 and a golf day at Barnet Golf Club, which raised around 30,000.

Alongside the fundraising and awareness events, a number of professional footballers have also done their bit to help Ryley.

At the football tournament, which saw over 100 men come along for a kick-around and to take part in the raffle, Aston Villa player Henri Lansbury donated a box at Aston Villas ground for the match against Tottenham Hotspur to raise some funds.

But he made one promise, two of the seats in the box were for Ryley and his dad, Adam.

It was such a lovely thing to do from Henri and to even give two of the seats to Ryley and his dad just made it that bit sweeter, said Sarah.

Ryley had the best day and even managed to meet all his favourite players for the team he supports, Tottenham.

Inspired by Ryley and his story, Tottenham forwards Hueng Min Son and Dele Alli, wore wristbands, which read Ryleys dream to walk and put pictures of the bands on their Instagram.

Whilst at one of the fundraising events, Sarah and Adam met a family whose son had SDR when he was young and is now walking.

This inspired the family and has left them feeling positive about the outcome of Ryleys operation.

Sarah added: We met the boy and you wouldnt have noticed that he even had Cerebral Palsy. It gave us hope.

Doctors said he can go from a walker to canes and then potentially to no canes and it all became a bit real when we saw this young boy.

"It could mean that, in a year or so, he could be running around on a playground with his friends rather than being wheeled around.

At school, I got told by one of the teachers that he couldnt go down the slide and it really choked me up. It is sometimes the simplest things that hit you.

For me getting him that independence would mean absolutely everything to me. We would give our world for it to happen.

To donate and help fulfil Ryleys dream to walk, click here.

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The three-year-old Borehamwood boy who dreams of being able to walk - Hertfordshire Mercury

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