A mother’s plea for help for RAMS centre

The Race Against Multiple Sclerosis (RAMS) centre, which treats a variety of conditions, is facing closure if it cannot secure a much needed injection of cash. However, Centre Manager BJ Beck has said they are struggling to find funding and may have to close their doors at Christmas.

Deborah McClenahan, the mother of 13 year old Talitha Grace, who has Down’s Syndrome and Cerebral Palsy, as well as other conditions as a result of a severe head injury when she just three months old, has said the service offered at RAMS is vital.

“I am the mother of a wonderful young lady named Talitha Grace, who happens to have Down’s syndrome and cerebral palsy,” she explained.

“When Talitha was three months of age, she sustained a traumatic brain injury. The doctors at the Royal Belfast Hospital for Sick Children resuscitated her and after several difficult months, she was able to come back home.

“We will be forever indebted to them, for their professional care and expertise, however Talitha was left with severe athetoid cerebral palsy, mild spastic quadriplegia and a right sided hemi paresis.

“Physically, Talitha was likened by a centre for Brain Injured Children, to a three month old baby. She is now thirteen. She has no balance and cannot stand or sit independently. If placed on the floor, she cannot roll. She is unable to feed herself and has limited head control.

“While in hospital, she lost her swallow and came home with a nasogastric tube for feeding. We were advised that she would never eat, however she is able to take a pureed diet and enjoys her food. Her physical limitations however, do not detract from her personhood, sense of humour or intrinsic worth. She is a bright young lady, who just happens to be severely limited on a physical level.

“In 2004, when she was two years old, we began attending RAMS for weekly hyperbaric oxygen therapy, as prescribed by Professor James who has since retired from Dundee University. Talitha has mixed muscle tone. She has hypotonia which is commonly a feature of Down’s syndrome, so can be very floppy. But some muscles are tight and also go into spasm, due to the cerebral palsy and at times, it is incredibly difficult to dress her.

“After we started going to RAMS, I noticed an improved range of movement, her muscles ere not as tight and she had no painful muscle spasms.

“We also saw A vast difference in her peripheral circulation. Without oxygen therapy, her feet and hands are cold and purple - even in summer.

“We also noticed an improvement in swallowing. This is vital. When she is without oxygen therapy, I worry about the possibility of her aspirating.

“After RAMS experienced flooding, we stopped hyperbaric oxygen therapy and decided to try life without the weekly trips to Belfast. Looking back, Talitha had more antibiotics and sickness during that time, than the years previous when she attended the centre.

“We now live in County Tyrone and feel that it is imperative we make this trip every week, not only to enhance Talitha’s quality of life from day to day, but to ensure continued good health in the future.

“The benefits to her circulatory, respiratory, and skeletal systems, are immense and nothing that is currently available to her on the NHS, rivals this treatment in terms of benefits.

“I am deeply concerned at the possibility of impending closure. Many clients with diverse health issues, are reliant on this centre just to function on a daily basis. I do question why this type of treatment does not receive government funding when vast amounts of public money, is frittered away on nonsensical things.

“On a personal level and I speak on behalf of my daughter. She loves going to RAMS. Any clinic or therapy, usually induces tears, but the kindness of Vivienne and BJ, won her over at a very young age. Here, she is given attention and loved.”