‘I have to give him the best chance possible’

James Galvin (5) from Gortanabla, Taughmaconnell, Co. Roscommon, is a typical happy, little boy with a mischievous side and an infectious laugh that makes everyone smile. Like other children his age, he loves Nerf guns, tractors, Hot Wheels and his tablet.

But behind the laughter, his family faces the devastating prospect that he won't be able to walk independently by the age of 11 or 12, and will have to rely on a wheelchair in his teenage years unless he has life-changing surgery in America.

With the operation unavailable in Ireland, his family has set up a GoFundMe page with a €100,000 target and a simple and poignant message - Let's Keep James Walking.

Less than a fortnight after it went live, it has already breached the €17,000 mark, something his mother Elizabeth Galvin, née Beirne, who is originally from Athlone, described as “unbelievable.”

Everything seemed normal when James was a baby until the nine-month check-up stage when a doctor was concerned about his muscle tone. It was later revealed that James had a brain injury called PVL and cerebral palsy which resulted in spasticity, a condition in which muscles stiffen or tighten, preventing normal fluid movement.

It was a lot for Elizabeth, a stay-at-home mum, and her husband Anthony, a storeman with the HSE in Roscommon town, who are also parents to Kayla (7), to get their head around initially, and a bit of a blur of medical appointments followed.

Now, over four years on, despite treatments like Botox giving temporary help, the youngster faces a fierce battle to stay mobile as he grows up, and his mother believes his only hope is spinal surgery in the US.

Thankfully, Elizabeth says intellectually and socially James “would buy and sell you” and is doing well in St Ronan's NS, Taughmaconnell, where he is in Junior Infants.

However, as her son's bones grow his muscles are getting thinner, shorter and less flexible, she says which particularly affects his core and hamstrings with the right side worse than the left. This means he has difficulty with balance or walking a short distance without tiring. He has a limp and his right heel cannot touch the ground. In addition, James also has to wear splints for several hours a day to help structure and position his feet which he hates. and everyday tasks like dressing or climbing stairs are extremely difficult, and in some cases, like putting on socks nigh impossible.

While they struggle daily to keep James mobile with exercises, the family says it is now only a matter of time before he loses his mobility altogether.

“When he hits 11 on, we're told he's going to lose the ability to walk independently and be reliant on a wheelchair,” says Elizabeth starkly.

In a bid to give her little boy a chance at a better future, she looked into other options, and after a lot of research, found a lifeline in the US with the world-renowned Dr TS Park, the world's top neurosurgeon who performs a surgery called selective dorsal rhizotomy (SDR) at St Louis Children’s Hospital in Missouri.

James was later assessed and was judged an excellent candidate for the operation which will permanently remove the spasticity or tightness down his right side and improve his balance by cutting into some of the sensory nerve fibres that come from the muscles and opening the spinal cord.

It has been performed successfully on 4,000 candidates, explains Elizabeth, who says that this will offer a "permanent solution" for her son rather than a lifetime of orthopedic operations here.

“Basically, it takes away the tightness, that spasticity, that will be gone forever,” she adds, saying he will have to spend three to five days in bed after the main surgery, which is followed by a muscle lengthening operation and then intensive physio for three weeks, followed by further physio when he returns home for up to a year.

“The sooner he has it, the better for him. The recovery is better the younger they are,” says his mum, stressing that Dr Park is the “world's best” and her son is booked in provisionally for August of this year.

It does come at a price, however, and a fundraising goal of €100,000 has now been set.

While Elizabeth says the family didn't want to have to do a public appeal, and at times, it feels like begging, they believe this is their only option because they don't have €100,000, and they want James to have the chance to do all the things boys his age can do, – be that cycling, kicking a ball, dancing or playing tag with classmates.

“We'll do it, we have to do it. If I sit by and do nothing, I don't want to look back in ten years and think what I could have done for him (James). I have to give him the best chance possible. That's all we can do,” Elizabeth says candidly.

Speaking to the Westmeath Independent, she admits how strange it is to be asking people for help publicly but she could not be more thankful to those who have supported them so far.

“It's going to change his life – there is no doubt about that. It'll change for the better, otherwise, his life will change but not for the better,” she forecasts. “Every little helps, I sound like Tesco when I say that but everything really does. From €100 to €5, it all adds up,” Elizabeth ends.

To support James and the Galvin family's campaign, click here