RAISE FOR REILLY

Reilly McCarthy, four, who has spastic diplegia cerebral palsy.
Reilly McCarthy, four, who has spastic diplegia cerebral palsy.

Little Reilly McCarthy wants to run about and play football just like his big brother.

But the four-year-old has cerebral palsy and struggles to keep up with other children.

Justine and Chris McCarthy with Reilly, four, and Carter, six.

Justine and Chris McCarthy with Reilly, four, and Carter, six.

Reilly’s family is now hoping to raise the £21,000 needed for him to undergo the life-changing surgery to help him walk and play just like his friends.

The Selective Dorsal Rhizotomy (SDR) treatment is no longer available on the NHS, and so the McCarthys need to raise the cash themselves before Reilly can have the treatment.

Reilly was born prematurely at 30 weeks, weighing just 3lb 11oz. He remained in hospital for five weeks.

But Justine later became concerned about his delayed development.

Justine and Chris McCarthy with Reilly, four, and Carter, six, at Disneyland Paris.

Justine and Chris McCarthy with Reilly, four, and Carter, six, at Disneyland Paris.

“I noticed he wasn’t hitting his milestones such as sitting up or making any effort to move anywhere,” she said.

“When he was about one a consultant noticed his legs were scissoring, and that’s when it first came up that he may have cerebral palsy.”

After several assessments and an MRI scan, Reilly was diagnosed with spastic diplegia cerebral palsy.

Cerebral palsy is a condition that affects muscle control and movement. The spasticity means muscle tone is tight and stiff, causing a decrease in range of movement as well as pain.

“He didn’t start sitting up until he was 15 or 16 months old, and didn’t start trying to walk until he was just over two,” said Justine.

However, despite his difficulties, Reilly is progressing better than expected.

“I was told he may never walk unaided but he is such a determined little boy he now walks unaided,” Justine said.

“He walks on his tiptoes and tries to run and jump without falling over.

“He has such a gait that he becomes tired and suffers aches and pains regularly.

“Due to his gait he loses his balance often and falls over a lot, sometimes really hurting himself which has led to trips up to A&E.

“As Reilly grows his muscles become tighter making walking more and more difficult.”

This week the family was told Reilly meets the criteria for the SDR surgery, a procedure which involves dividing and cutting some of the nerves in the spinal cord that contribute to spasticity in the lower limbs.

“I was over the moon when we were told he was an ideal candidate for the surgery,” Justine, 32, said.

“They were really positive that it would make a big difference to his future.

“But then they told us we needed £21,000 to pay for it and I was heartbroken, it was so disheartening.”

Justine and her husband Chris, 36, who live in Lancaster, have now set up a fundraising page to help raise the much-needed cash.

Justine said: “Reilly is such a happy little boy and like any parent, we want the absolute best for him.

“To see him not wake up every night due to pain and spasms, walk longer without asking to be carried or go in his buggy due to his little legs getting tired or painful is the biggest wish for us as anyone could imagine.”

Reilly was wearing leg splints until recently, but now sports special boots to aid his walking, and has a specialised buggy for when his legs are too sore.

He also takes medication to help with the pain he is constantly in.

But while Reilly is normally a happy-go-lucky child, recently Justine has noticed him beginning to question his disability.

“He has started to acknowledge his struggles,” she said.

“He sees his brother Carter play football and he wants to play. He wants to join in with everything Carter does, but he is starting to acknowledge he hasn’t got the balance or stability.

“But he is always so happy. Now it’s starting to affect him emotionally it absolutely breaks my heart.

“I want to do everything I possibly can to keep that happiness about him. I don’t want him to miss out on anything.

“He just brings so much joy to everyone’s lives. He’s touched so many people with how happy he is and he never lets it get him down.

“I have never seen a kid so happy when he has so many problems.

“He recently developed a stutter too but he just takes it all with a pinch of salt.”

Reilly goes to Furnace Barn day care centre in Halton, as well as Halton pre-school, and will hopefully join six-year-old Carter at Halton Primary School in September.

“I would rather raise the funds as soon as possible before it starts to have an impact on his life,” Justine said.

“The surgery would mean time off school and he would be trying to catch up. The sooner he has it, the better for him.

“I am so overwhelmed with the amount of support we have had. I hate having to ask people to help but it’s been absolutely amazing how people have come together to offer their help and support.

“I can’t believe the generosity of people I don’t even know.”

Justine said the family hopes to hold some fundraising events locally as well as family and friends helping out in Barrow and in the south.

She is also hoping to take part in the pre-school version of Bad Ass Mucker with Reilly.

As the Guardian went to press, the fundraising page had reached £1,075.

To find out more and support Reilly’s cause, go to https://www.gofundme.com/3zghb-reillys-sdr-op