US surgery can give little James chance of a full life
James Galvin was attending his nine-month developmental check when the doctor noticed his knees were bent up and he was unable to sit as well as he should be.
His mam Liz recalls that she just thought after already having daughter Kayla two years earlier that boys were naturally slower to progress.
But tests showed that James had cerebral palsy, which mostly affected his right leg. As he was growing, the condition worsened, with his hamstrings tightening as his limbs lengthen.
“His fine motor skills are very good but his right knee is bent in and he’s always walked with a limb because the muscle is so tight – he never touches the floor. He has spasticity which is getting worse. It’s a battle to do physio every day with him, he’s pulling against the tightness,” Liz explains.
He is only able to walk short distances and gets exhausted from the effort. He wears braces daily on both legs and hates them as they feel hard and uncomfortable and slow him down.
James is a junior infant at St Ronan’s National School, Taughmaconnell, four miles outside Ballinasloe.
Through a cerebral palsy support group, the family discovered that the neurosurgeon Tae Sung Park had pioneered a surgery called SDR at St Louis Children’s Hospital in Missouri.
James needs two surgeries – the SDR costs $40,000 and after that he needs muscle lengthening surgery costing $15,000, with three weeks of intensive surgery at the Missouri hospital. He will then need two years of physio at home to build up his strength as he will be very weak when the spasticity is removed.
Read the full story in this week’s Connacht Tribune, on sale in shops now, or you can download the digital edition from www.connachttribune.ie – and to donate to help James, log onto https://gofund.me/e457e062