The mother of a 14-year-old with a debilitating spinal condition has revealed the heartbreak their family has gone through since her daughter's diagnosis last year.
Lisa Leahy Franklin's daughter Shauna suffers from severe scoliosis and was placed on an urgent list for corrective surgery in March 2014 following a consultation with orthopaedic surgeon Pat Kiely at Our Lady's Hospital for Sick Children in Crumlin.
When Shauna's parents discovered a lump on her back, after she complained of pains during PE class at school, they attended their local GP who immediately referred Shauna for x-rays which revealed a double curve in her spine.
However, some 14 months after being placed on the 'urgent' surgery list, and subsequently on the cancellation list, Shauna's mother told independent.ie that their lives remain "on hold" as they wait to be called in.
"At the moment it's been hanging over us for over a year - it's pure torture," the mother-of-four said, while also revealing the complications such as blindness and paralysis that the inevitable surgery may cause.
"The best way I can describe it - it's like you're in an airplane and they're going to throw your child out the open door. They're telling you that they've given her a parachute but they have no guarantee she's going to be ok," she said.
"There is constantly a horrible tight disgusting feeling in your stomach. But if she doesn't get it [the surgery] soon, the risk may be even greater as her condition worsens."
Wexford-based Lisa's youngest daughter Katie (6) has also recently been diagnosed with a mild form of scoliosis, and it was at her November consultation last year that Shauna also had a follow up X-ray.
Shauna's S-shaped curve was found to have increased by 11 degrees in both the top and bottom curve at that stage - and the fear is that the curve is even more pronounced now, six months on.
"We have noticed that the lumps are becoming more pronounced and more visible," Lisa told independent.ie.
"Her spine is not only curving in two places - it is also twisting so that it is moving her hips out of place. She is beginning to walk now with a limp."
Straight A student Shauna has become "very withdrawn", even with her family, and has been putting herself under pressure with schoolwork and is already "stressing" about her Junior Certificate next year.
Her condition has affected her physically - she has stopped playing on the camogie team and dancing in panto due to chronic pain, but Shauna's mother is more worried about the psychological impact of her illness on her.
"She refuses to talk about her back or the operation. I think she is focussing so much on the academic side of things just so that she can block it all out," Lisa said.
Shauna's relations have been supportive as she waits for her operation, paying for her three pre-op MRIs to be done privately, and her aunt ran the mini marathon last year for the charity 'Straight Ahead', which performs major orthopaedic operations for children on HSE waiting lists and in urgent need of surgery.
"We have one of the lowest orthopaedic surgeon to patient rates in the Western world. The total number of hours completed by orthopaedic surgeons in Ireland equates to five full-time consultants in the entire country," her mother told independent.ie
Scoliosis Ireland have helped establish an online petition calling on Minister for Health Leo Varadkar to reduce the waiting lists for surgery for children with scoliosis.
The group, which has gathered over 3,000 signatures, plan to protest outside Dail Eireann on Tuesday, May 12 at 1230pm.
A spokesperson for the Health Minister has said that waiting times for scoliosis services "are unsatisfactory and must be addressed as a priority."
"Demand for scoliosis surgery has been increasing, with resulting pressure on capacity. But it has been identified as a priority by the Minister and he is keen to make as much progress as possible in this area in the short term."
A spokesperson for Our Lady’s Children’s Hospital, Crumlin has said that there are currently 174 children on their spinal surgery list.
"There has been a commitment from the HSE in relation to additional funding for paediatric spinal surgery for 2015 and Our Lady’s Children’s Hospital Crumlin are in ongoing discussions with the Department of Health/HSE/ and Children’s hospital group in relation to the service," said the spokesperson.