A HEARTBROKEN mother said she feels her child with Down syndrome and arthritis has been left behind after their medical appointments were cancelled and MRI requests denied.
While others have left lockdown, Jackie Connolly said that she and her 12-year-daughter Katie now have to spend the majority of their days indoors due to fears around coronavirus.
The mother-of-one said Katie often complains of severe pain but they have no way of tracking the progression of her arthritis. Jackie pointed out that this could have been prevented with a simple MRI.
Just a couple of months ago Jackie voiced her concerns about the lack of paediatric anaesthetists at Cork University Hospital which denied Katie access to an MRI.
At the time Jackie had explained that Katie’s sensory issues made her unable to tolerate the noise from the MRI machine. However, hospital policy required that the maximum dose of sedation given to a child is limited to 20mls which Jackie said is not sufficient to sedate her daughter.
“The next best thing after an MRI is an X-ray which Katie was due to get at CUH but unfortunately this was cancelled too,” she said.
Now, the parent has been dealt with another blow after learning that her child’s appointment to assess Katie — due to take place at Crumlin Children’s Hospital-has been cancelled.
“These children have been left in limbo,” she said. “People don’t know where to go or what to do and the list is only getting longer. Katie has a very high pain threshold so we have no way of knowing just how much pain she is in. She tells us that she is experiencing pain in her feet and her back. Nobody is checking on her and we haven’t been offered an alternative date yet. Katie never gets a break. We have been fighting for her all her life. As a 12-year-old girl with special needs, she deserves better.”
Jackie said that cancellation letters remain a huge worry for the parents of children who are ill or have special needs.
“Everyone dreads that letter. All you can do is hope that it doesn’t arrive before your child’s appointment comes. We have friends who have been told their child won’t be seen by a specialist until 2029. The HSE needs to get this sorted so that appointments are back on track again.”
Jackie has to sacrifice a lot to keep her child safe. “The situation is a double-edged sword because the medication she takes for her arthritis suppresses her immune system making her even more vulnerable. We haven’t really been many places at all because there is always that fear that she might catch covid. Before she had a very full life attending dancing and special Olympics but that’s all changed for the moment.”
Jackie came to media prominence a number of years ago after she was denied a medical card for her daughter. She eventually won the battle after the decision was overturned following a long campaign by Jackie.