MOVING ON UP Jack Holmes and Molly McNamara pictures in the foreground while coach Steph Robertson works on Iarlaith Farrell in the background, at Gielty’s Bar, Dooagh, Achill. All three children have cerebral palsy and their families say their lives have been transformed since they had selective dorsal rhizotomy in the USA. Pic: Michael McLaughlin
Gielty’s pub on Achill Island is the most westerly pub in Ireland. Next stop is Keem Bay and the wild, blue Atlantic.
It’s a Thursday morning in March, and the hall at the back of the Dooagh pub is witness to something extraordinary. A collection of Mayo children are showing a level of courage and determination that would put most people to shame.
All the children have cerebral palsy. As you watch Molly McNamara (6) from Dooagh, Iarlaith Farrell (5) from Charlestown and Jack Holmes (8) from Crossmolina and others at work, you cannot but be blown away by their bravery and resilience.
Under the tutelage of Scottish coach Steph Robertson, these children are literally making huge strides every week to fight their condition and make themselves as independent as possible.
It is Steph Robertson’s fourth trip to Gielty’s. She is here for four days and will work with each child for two hours every day she is here. It’s like an intensive workout to make the most of her time here. The families are extremely grateful to Alan Gielty for providing the use of the pub’s hall free of charge every time they need it.
The children have all undergone a transformative surgery in the US called Selective Dorsal Rhizotomy (SDR), a procedure that removes the spasticity and high tone from their legs, issues that hugely restrict their movements.
The surgery has been the passport to a new life for these children, but they’ve to put in plenty of work afterwards to fully realise its benefits.
But why is some of that work taking place in a pub on Ireland’s largest island under the watchful eye of a specialist coach flown in from Scotland and not in an Irish hospital?
All three parents say the improvement in their children since the SDR surgery has been considerable, both in terms of greater movement and pain relief. The surgery was not approved for any of these families in Ireland, however. Quite the opposite, in fact.
“We were told absolutely not to do it, that we were putting Iarlaith’s future health in jeopardy. The attitude was that spasticity was the only thing holding him up. That’s simply not true. Spasticity benefits no one at all,” Iarlaith’s father Ciarán tells The Mayo News.
It is a similar story for the McNamaras. Molly had the SDR surgery in June 2014 and has not looked back since. But they were warned against it.
“Before she had the surgery she had cane walkers and she was dragging them after her,” Molly’s father David explains. “It was no good, and her hip started to displace. We were told we’d have to get a wheelchair for her. It was horrible to be told this, and for SDR to be dismissed without so much as a second’s thought made it harder.”
“We were more or less laughed at when we said we were getting it. We were made to feel as if we were almost going to a witch doctor,” Molly’s mother Natasha adds.
“We were a little bit discouraged from going. There was a little bit of scare tactics going on. They would love to put you off,” confides Karen Holmes, whose son, Jack, had the surgery in 2013.
Some children with cerebral palsy in Ireland are prescribed the surgery, in which case it is performed in the UK. However, not all children are deemed suitable for the UK surgery, and the families we spoke to were forced to look at options further afield.
It was then each of them came across the work of Dr Tae Sun Park in St Louis, Missouri. The surgery, flights and the six week stay required for intensive follow-up treatment costs approximately €40,000. Though expensive, the alternative was not an option for these families.
“We had the choice – either accept what we were told in the Central Remedial Clinic (in Dublin), that Molly would be in a wheelchair by the age of seven, or go to Dr Park in the USA, who said Molly would be walking independently by the age of seven. As a parent, which do you think you would go for?” asks Natasha McNamara.
Undergoing this surgery against Irish advice means these families have to source the SDR aftercare themselves. They only receive the type of ongoing HSE care afforded to all children with cerebral palsy – though there are issues here too (see News, page 3).
The families are accepting of this – they knew it was what they signed up for. But they can’t help but wonder why the surgery was not an option afforded to them in Ireland.
They argue that not going ahead with SDR would have proven an even bigger burden on Irish state coffers. David McNamara points out that if Molly was in a wheelchair, which is where she was heading without the SDR surgery, the cost of wheelchair and home adaptation grants, not to mention associated healthcare burdens, would have been be significant.
‘A great kid’
As we talk, Molly is going through an intensive session with Robertson. Her determination never ceases to amaze both her parents and the coach. “Molly is stubborn and headstrong. On one of the first trips over to Steph in Scotland, her target was to do three or four steps. Molly said ‘If I do 25, can I get a (Nintendo) DS?’ We said ‘Oh yeah, of course you can!’. We thought there was no fear of that. Lo and behold, she did it, and we had to get her the DS,” recalls Natasha, laughing.
“Her progress has improved every time she comes to see me. She’s walking now, and she is a great kid,” says Steph Robertson.
We ask Molly does which she prefers, life before or after the surgery. “After,” she replies emphatically. “I couldn’t do anything before.”
All families are keen to acknowledge where they have been fortunate. The McNamaras single out the staff at Dooagh NS on Achill Island, where Molly is in Senior Infants, for all their help, while Ciarán Farrell is full of praise for everyone at St Attracta’s in Charlestown and also to Enable Ireland for providing ‘invaluable’ home supports.
Karen Holmes is extremely grateful to locals in the Crossmolina area who have helped with fundraising for the life-changing surgery and for the ongoing necessary aftercare – surgery and after care that she too believes should be available within the Irish healthcare system.
More on this story Life after surgery