Yvonne and Garry Cashman from Midleton, Co Cork, need to raise €75,000 to ensure Culann, aged three, undergoes the highly specialised operation in England that will allow him to live a more independent and pain-free life.
“We want to give him every chance of an independent and pain-free life, to be able to live the life that Culann can,” Yvonne said.
The couple issued an appeal for help last night as they launched the Culann Wants to Walk trust and fundraising drive.
Yvonne, a public health nurse, and Garry, a garda, who are parents to Gearóid, nine, celebrated the birth of triplets, Culann, Darragh and Anna May, three years ago. They were born three months prematurely on St Valentine’s Day 2012, weighing about a kilo each.
Yvonne, a former neo-natal nurse, said while they were delighted with the arrivals, they were acutely aware of potential complications. Anna May was seriously ill for the first five days of her life, but she improved and, thanks to the excellent care of the staff at Cork University Maternity Hospital’s neonatal unit, the triplets went home eight weeks later.
Yvonne said life was extremely busy, but uneventful, for six months before she noticed that Culann was clenching his right hand. She sought the advice of consultant neonatologist Prof Anthony Ryan at CUMH who, after assessing Culann, said he shared her concerns. Culann was later diagnosed with spastic diplegia cerebral palsy — hypertonic cerebral palsy, which makes his muscles very stiff — with the spasticity affecting his legs and his right arm.
“Because they were born early, we always felt there would be a risk and, when Culann was diagnosed, we felt, well, one out of three isn’t bad,” Yvonne said.
However, by the time Darragh turned one, Yvonne felt he wasn’t progressing physically as well as he should, and, after insisting on an MRI scan, her worst fears were confirmed when he was also diagnosed with hypotonic cerebral palsy, which results in low muscle tone.
“To be honest, to get a second diagnosis of cerebral palsy was devastating. We knew to have two children with special needs would be difficult to cope with,” Yvonne said.
Thanks to Enable Ireland’s early intervention services, the boys get regular physiotherapy, occupational therapy, and hydrotherapy. The triplets attend Singing in the Rain playschool in Midleton two days a week and also attend Enable Ireland preschool once a week.
Darragh has benefited from horse-riding therapy, which has helped strengthen his core. Culann, who also gets speech therapy, was receiving botox injections to reduce muscle spasticity, but the effects weren’t long-lasting. He used a Kaye walker to take steps, and uses a power-based wheelchair. He wears a dynamic movement orthoses suit to prevent his hips from dislocating and to keep his legs and pelvis aligned correctly, but his condition means he can’t stand or walk independently, he can’t roll over and needs to be turned two or three times at night, and he can’t get in or out of his bed independently.
The couple researched their options and discovered selective dorsal rhizotomy (SDR) surgery, which is a complex and specialised procedure pioneered in the US involving surgeons treating muscle spasticity by identifying and severing a select number of nerves which run to the legs. The couple contacted SDR expert, John Gooden at Leeds Children’s Hospital, who described Culann as an excellent candidate for the surgery.
The surgery offers Culann the prospect of greatly improved independence and reduced pain, but he is likely to still require a wheelchair for long distances.
However, the type of SDR required by Culann doesn’t qualify under the current criteria of Ireland’s treatment abroad scheme, which means the family has to raise €75,000 to fund the procedure and the two years of intensive rehab and aftercare.
The family hope Culann will undergo the surgery next summer. He will attend SDR physiotherapy specialists every three to four months, alternately in Britain and Dublin, and will need specialised equipment at home to ensure he benefits fully from the surgery.
“Culann is a true warrior, as his name implies. If he gets the surgery now, he won’t have to rely on the health services in the long-run,” Yvonne said.