Grace's story - juvenile idiopathic arthritis

Arthritis can affect young children, even babies. Although treatment is now very effective, the diagnosis is still a blow to most parents, who face uncertainty about their child’s future, as the father of four-year-old Grace Bolton explains. 

For little Grace, diagnosed with childhood arthritis at the age of just two and half, the future is uncertain.

Her parents, Gary and Kathryn, know that their four-year-old daughter will probably never be as fit, strong and active as her three other siblings. They don’t know whether Grace’s condition will continue to dominate her life as she grows into adolescence and adulthood, or whether her arthritis symptoms will fade away, or even go into remission.

Like any parents of youngsters with arthritis, Gary and Kathryn, from Belfast, are taking each day as it comes. After the six month gap between Grace developing symptoms – a limp, swollen knees and ankles - and the shock of the diagnosis, they are happy that their little girl is receiving the best possible care from their local paediatric rheumatology team at Musgrave Park Hospital.

And despite the fact that Grace has less stamina than her contemporaries and that her younger sister has already outgrown her, she is a lively, happy child who copes well with her regular injections and drug treatments, and is already ruling the roost at her new nursery school.

Her childhood arthritis is so far taking a typical trajectory. Once the disease started to kick in and spread to more joints, for a time she was unable to walk because of the swelling to her knees, feet and ankles. A steroid injection helped to quickly reduce the inflammation, but when a second injection failed to have much effect, she was then put on methotrexate, which has led to her symptoms improving.

“Grace is the star of the family; she has a very strong personality, copes very well with her condition, and with the injections and blood tests,” says her father. “She can do most things that other kids do, just at a slower pace and for a shorter period of time, so she is usually the first one in when they’ve been playing out on their bikes, for example. She does get tired and she has her good days and bad days.”

“I’d welcome anything that would help us to know how Grace’s arthritis will pan out,” adds Gary.”We’ve been given the impression that she will have this for the long term, at least until she is a teenager, but no-one knows for sure. After we recovered from the initial shock of knowing that our daughter had arthritis, we have just got on with things, and if we can get Grace living a pretty normal life, that’s as much as we can hope for.”

Grace’s story first appeared in Arthritis Today in 2009.