Watch as Antrim family express hope device developed to help enhance quality of life for their epileptic daughter can help others

Several groups with the Northern Health and Social Services Trust have now worked together to produce a set of guidelines and protocols for the safe use of the device. Details of the device, which is a special harness, have also been shared with all Epilepsy Nurses in Northern Ireland and with consultants who have an interest in the condition.

Katie Ryder had been born with a rare chromosomal abnormality, causing her to have both profound Autism and Epilepsy. These conditions brought with them a series of health problems, including the fact she would have Drop Seizures.

Katie’s mother, Paula Ryder, recalled many incidents when her daughter would fall to the ground without warning, frequently suffering severe injuries: “We tried many different pieces of equipment, but none of them provided the physical support she needed.” It was Katie’s father, Dermod, who eventually came up with a solution to the problem:

“I got an old harness and put handles on the back. The next time Katie took a seizure, she was wearing my make-shift contraption and we were able to keep her from dropping to the ground.

I was put in contact with a man in England who makes professional harnesses and after many discussions and exchanges of e mails and photographs we arrived at the final product.” Dermod and Paula used the new harness in the months which followed and although Katie continued to take Drop Seizures, she never again suffered any injuries. They brought the device to Sarah McCann, a nurse who had been helping support the family over many years.

Sarah is Epilepsy Nurse Specialist with Magherafelt Community Services and a former Northern Ireland Royal College of Nursing ‘Nurse of the Year ‘award winner, as a recognition of her work in this area: “Dermod, Paula and Katie brought the harness to me, and they demonstrated it. I even tried it myself. I could see that it would provide the sort of support which would allow Katie to be brought safely to the ground if she had a Drop Seizure. It could also stabilise her on those occasions when she had a minor seizure. I also noticed a positive change in Katie’s posture when she was wearing the harness. She was now walking with her head up.”

Sarah believes the harness can improve the lives of so many people: “There are many families dealing with situations like that faced by Dermod and Paula. Drop Seizures are so unpredictable. Family members can be worried about possible injuries that some resort to measures such as having their loved ones wear a helmet or use a wheelchair. This new harness has the potential to give them a freedom they did not have before.”

Katie died in January 2021, at the age of 25, following an Epileptic seizure while she was asleep. “We are keen that families who are dealing with the sorts of issues we have dealt with might benefit from the harness. It would be good if it could help others. For us, it is Katie’s legacy. She proved the need for such a harness and then proved that what we had devised actually worked,” said Dermod.