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A STRABANE family say they have been left ‘devastated’ after being told their disabled daughter must travel to England for life-changing scoliosis surgery – eight years after first being placed on a waiting list in the North.
Lily Lafferty, who has 22q deletion syndrome and autism, was due to have her operation in Belfast. However, because of a lack of some scoliosis surgeries here, her parents have now been informed that the operation will only be available at Stanmore Hospital in London in January.
The move has placed enormous pressure on the family, as Lily’s mother, Rachel said she would be forced to leave behind her 19-year-old son, who also has autism and requires round-the-clock care.
“I really do not know what to do,” Rachel told the Chronicle. “We have been travelling to Belfast for appointments for eight years and to be told that Lily will now have to go to England to get her operation has really put a massive strain on the whole family.”
Surgeons at Stanmore have told the family that Lily’s spine is now in such poor condition that it will require two separate operations. That means the Laffertys would have to spend two to three weeks in England while she recovers.
“I don’t think Lily’s mental state was ever taken into consideration,” Rachel continued. “Lily has autism and 22q deletion syndrome, which makes going anywhere a living nightmare. It’s beyond me how they expect me to travel on boats and planes with a child we can barely get out of the house.”
22q deletion syndrome, is caused by the loss of a small part of chromosome 22 and can lead to a range of physical and developmental issues, including heart defects, immune problems, and skeletal deformities.
Doctors believe it is this syndrome that caused her scoliosis. She also has hypermobility in her hands, which makes simple tasks such as washing her hair very difficult. She also has a thyroid condition and requires lifelong medication. In addition, she is attending the Koram Centre for treatment of severe anxiety.
Rachel said the uncertainty and long delays have had a severe impact on Lily’s mental health.
“I just desperately want answers from the government as to why they would put a child through this when we have the facilities in Northern Ireland to carry out this surgery,” she said.
While the family have been told that financial support would be available to fund a family member to care for Rachel’s son Lorcan while she is in England, she said this is not a realistic solution.
“Lily’s brother is extremely attached to me,” she explained. “He can become aggressive if his routine is disrupted and can lash out and hurt himself, and he needs specialist care when I’m not able to care for him.”
Speaking on Wednesday, a spokesperson for the Belfast Trust said, “Scoliosis surgery is a regional service and only offered in the Belfast Trust. However, the two-stage correction surgery is much more complex and not carried out in Belfast, therefore patients are referred to our colleagues in Stanmore.”
