“A FRIENDLY LITTLE guy who always has a smile” – that’s how Mark Jones describes his five-year-old son Fionn who has Spastic Diplegic Cerebral Palsy – a serious condition which makes it impossible for him to walk.
However, Fionn has recently been accepted for a potentially life changing operation that is not available in Ireland – but is carried out in the USA, the UK and various countries in Europe.
Fionn was born more than five weeks premature and was also born with a cleft lip and palate. During his palate operation in Temple Street, Fionn was assessed as he was slipping behind other children his age.
Further tests were carried out and six months later – at just 15 months – he was diagnosed with Spastic Diplegic Cerebral Palsy. The condition makes his limbs stiff and his body weak.
Fionn’s dad Mark told TheJournal.ie that the condition mostly impacts Fionn’s lower body – “the tightness of the muscles on his legs”.
Jones explained that, “The muscles pull the leading leg in front of the behind leg so the leg gets caught up in itself … he basically crawls around on his hands and knees.”
He added that Fionn will be six in May and he can get a bit frustrated by the physical freedom his younger sister has:
He has a sister who is nearly four and because developmentally she has no issues – he tends to get a bit frustrated at that. She can run and jump and play and grab things and run away.
From crawling to walking
Fionn attends preschool at the Central Remedial Clinic and his parents became aware of the operation available when two of his classmates had the surgery.
Fionn’s dad said, “There are lots of cases where children have gone from not being able to walk, to being put in a walker-frame with two wheels.” Jones describes the walker-frame as “like a zimmerframe for children”.
In some children it’s nearly miraculous … from children who are crawling around on their hands and knees to walking with crutches or even walking independently.
The procedure is called Selective Dorsal Rhizotomy and involves an incision being made in one vertibra in the spine and they test each of the nerves individually and find which one is connected to spasticity and remove it.
Jones said results vary and added that ”for children who have Spastic Cerebral Palsy – because they don’t know anything about life without pain, it’s very unusual for them when they have the surgery”.
The best result are achieved with children aged from two to six before bone deformities from the pull of spasticity take place.
Surgery date
The family have received the surgery date for Fionn and will be heading over to Missouri at the end of June where Fionn will be treated by the most experienced surgeon in this area.
Jones said, “We’re in the middle of fundraising, the cost is around €100,000 over a two year period.
You have to have the money for the surgery in the hospital bank account 30 days before the surgery.
Jones said it will cost around €60,000 – €65,000 to get over there, have the surgery and stay for a month and do three to four weeks of physio. There’s also a possibility Fionn may need to have another operation.
He added that, “Surgery is just beginning of the process – the overall tone of the muscles underneath is lower than what you’d expect – so there’s a year or two of physio.”
The rest of the money will be needed for post operation treatment and travelling back once for an assessment after a year.
Jones also explained that if Fionn doesn’t have this operation the likelihood is that he will have to have two or more surgeries on his back and hips.
“The spasticity as he grows tends to pull the hips out of their sockets and causes deformations to the spine.”
A report from the English health service found that even without the obvious benefits of the surgery – it makes sense for all children with Spastic Diplegic Cerebral Palsy to have this operation as the cost of surgeries to repair damage caused by spasticity and the long term care necessary is much more than the cost of the surgery and post operation care itself.
Discussing how the fundraising is going to far, Mark said, “In moments of need, people come forward.
“You don’t really know how generous people are until you’re in a situation like this.”
People can donate funds to go towards Fionn’s treatment at Fionnsjourney.com.
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