The State has stepped in to fund a potentially life-changing operation that could help a little boy with cerebral palsy walk and live pain-free.
The decision means that Culann Cashman’s parents can now use all the money raised by a major campaign to pay for an intensive two-year regime of vital post- operative physiotherapy.
An emotional Yvonne and Garry Cashman, from Midleton, Co Cork, said they were absolutely delighted that the Central Remedial Clinic (CRC) has sanctioned Culann’s surgery for funding under the HSE’s treatment abroad scheme.
Being able to fund the specialist physio will ensure that their four-year-old “warrior son” will get the maximum benefit from the specialist surgery which will be performed in England, they said. They also said the funding decision could pave the way for similar decisions on other children who might benefit from the same kind of surgery.
Previously, the couple was planning do most of the physio themselves, with the trust providing for just one professional physiotherapy session a week.
“We are now in the fantastic position of knowing we can use the portion of his trust fund which was previously allocated to the surgery cost to now pay a qualified physiotherapist to deliver sessions three to four days per week as part of the daily intensive physiotherapy regime he will require in order to maximise his potential and success of the surgery,” Garry said.
Culann, one of a set of triplets, and his brother, Darragh, both have cerebral palsy. Their triplet sister is Anna May and they have an older brother called Gearóid.
Darragh has hypotonic cerebral palsy, which results in low muscle tone. Culann has hypertonic cerebral palsy, which makes his muscles very stiff, with the spasticity mainly affecting his legs and, to a lesser extent, his right arm. Both boys have daily physiotherapy needs and Darragh has benefited from all of them, strengthening his core and increasing his function and ability.
But Culann, who uses a power-based wheelchair and a dynamic movement orthoses suit to prevent his hips from dislocating and to keep his legs and pelvis aligned correctly, can’t stand or walk independently. He can’t roll over and needs to be turned two or three times at night.
After extensive research, the couple established that selective dorsal rhizotomy (SDR) surgery would give Culann the best chance of walking and of leading an independent pain-free life.
The specialised procedure pioneered in the US involves surgeons treating muscle spasticity by identifying and severing a select number of nerves which run to the legs.
Last August, the couple met SDR expert John Gooden at Leeds Children’s Hospital, who described Culann as an excellent candidate for the surgery, which, were the funds available, could have been undertaken immediately. But at the time, Culann’s condition didn’t meet the criteria for the surgery to be funded under the HSE’s treatment abroad scheme.
The couple launched the Culann Wants to Walk trust last September to raise €75,000 to cover the cost of the operation, travel and accommodation expenses, the vital pre and post-op physio and costly essential specialised equipment.
“As a committee, we always believed that we would achieve our initial target but not in our wildest dreams did we think the fundraising would be as successful as it was,” said Yvonne and Garry. “We couldn’t have anticipated just how enthusiastically people would take Culann to their hearts.”
The couple reached their fundraising target some weeks ago. But following a gait analysis at the CRC, its experts said Culann would be a good candidate for SDR surgery which would now qualify under the treatment abroad scheme.
The Culann Wants to Walk fund trustees, Anita Bane, Adrian Cotter, and solicitor Alan McGee, said that following the committee’s final fundraising event on March 19, the trust’s fundraising activities have now ceased.
However, a number of events, organised by independent fundraisers and which have been in the pipeline since last year, will take place in the coming weeks.
“All of these funds and every cent donated will be kept in trust to be spent on Culann’s immediate, mid-term and longer term medical needs,” the trustees said.
They commended the CRC, Enable Ireland, and the HSE for committing to Culann and others like him, and said it would help these children maximise their potential and make them less dependent on disability and health services.
Yvonne and Garry thanked everyone who donated, attended events or gave up time to help them: “Our initial expectations were blown apart and the love and support Culann has received has been overwhelming, we simply can’t thank you all enough.
“We have had to refuse a number of recent kind offers of additional fundraising from some wonderful people. Some have been disappointed but we are conscious of other children who may be in need of SDR surgery and urge anyone still considering fundraising for Culann to consider these other families.”
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