A Co Donegal mum has spoken about the heartbreak and challenges facing children across Donegal suffering from juvenile arthritis.
Letterkenny woman Fiona Wynne’s daughter Jessica, aged just four, was diagnosed with oligoarthritis last year.
She is currently attending playschool, but her daily routine is not like other children.
Jessica has to deal with constant pain and stiffness in her joints, which limits her everyday activities.
“It would take her three hours to get her out to school in the morning,” Fiona told Donegal Daily.
“Your heart sinks when you hear her waking up in the morning because you know she’s going to be sore.”
“She can’t walk in the morning, she can’t hold a spoon or feed herself. It’s a fight to get her to eat.”
“Everyday is a constant battle,” the pregnant mother-of-two explained.
Fiona would have to bring Jessica into the shower every morning for 20-30 minutes to loosen out her joints before the day begins. On certain days, especially in colder weather, Jessica would have to be put in a wheelchair to get around.
The condition is spreading throughout the joints in her body and is preventing her from doing everyday play as a four-year-old such as riding a bike, Fiona said.
Jessica takes three doses of medication a day, and is beginning a chemotherapy treatment this week in the hope it will help her symptoms. However, the injection can deliver the same side effects as those that come with cancer treatment.
There are 1,200 children living with juvenile arthritis in Ireland. There are two consultant paediatric rheumatologists in the country, who are based in Our Lady’s Children’s Hospital, Crumlin.
Jessica has had to make the journey to Dublin to get all medication prescribed to her. She has had six appointments so far this year, two of which were in the past month.
The trip to Dublin is especially difficult for Jessica, as Fiona explains she would “completely stiffen up” after an hour of sitting in the car.
“It would be great if the rheumatoid doctor could come to Letterkenny, instead of having to travel four hours to Dublin, which often makes her (Jessica) worse,” Fiona said. She also has had to contend with short-notice cancellations and long waiting lists to access the service.
“It would save a lot of pain for the children to get medicine and steroids here,” she said.
Juvenile arthritis is an invisible disease, Fiona said. “To look at her, she’s perfect. It’s completely heartbreaking to see, but the child is completely crippled whenever they are getting it really bad. They are just constantly living in pain.”
“It affects younger people a lot worse than older people, because it affects their wee bodies more,” she said.
For now, Fiona is putting her hopes that the chemotherapy will help Jessica. If not, other forms of treatment will have to be considered. “I’m hoping that it will work miracles,” she said.
For more information on juvenile arthritis, visit icanireland.ie or call the iCAN helpline on 0868289817.