As we draw closer to Christmas, most children are writing letters to Santa with a wishlist of toys and presents that they look forward to opening on Christmas day.
For many children with chronic and painful conditions such as juvenile arthritis, their hopes are different. Six-year old Trinity is hoping for her arthritis to go away.
Around Christmas in 2014, Trinity’s world changed completely. Previously an active toddler, Trinity was suddenly unable to walk even a few steps as her foot swelled and became increasingly painful. After a series of tests, examinations, x-rays and scans, she was diagnosed with Juvenile Idiopathic Arthritis (JIA).
Whilst her foot was most badly affected, Trinity had inflammation in numerous joints including her toe, foot, ankle, knee, fingers, elbow and jaw. She was quickly started on weekly chemotherapy injections and pain relief, and had joint injections in a bid to rapidly reduce the inflammation. Long-term inflammation can lead to destruction of the bone and joint, so it was important to bring it under control.
Now, four years later, Trinity’s arthritis is largely under control but it she is not yet in remission. She still has pain. She still has stiff joints. She still experiences fatigue due to her condition. And now, she has had enough of the pain of the arthritis and the weekly pain of powerful chemotherapy drugs used to reduce her immune system.
Trinity has also had enough of the infections and bugs that she catches because of her reduced immune system. She has had enough of not being able to join in physical games today as much as she wants to, because if she does she will be in more pain tomorrow. It’s not fun being a kid with this condition.
Trinity’s parents found her heartbreaking Christmas Letter
A few weeks before Christmas, Trinity’s parents found a note she had written. It read:
“Dear Lord please make my arthritis go away. I know that you are helping daddy to find a cure for juvenile arthritis. You know how painful it is. And nothing is impossible. God you can help me.”
Juvenile Idiopathic Arthritis
Trinity is one of around 15,000 children and young people across the UK living with a diagnosis of juvenile idiopathic arthritis (JIA) – a crippling and painful autoimmune disorder that attacks the joints of 1 in every 1000 children and young. Children with JIA experience pain, inflammation, discomfort, reduced mobility and disability. In some cases it can also attack the eyes causing uveitis which can lead to permanent sight loss, and other organs.
JIA is characterised by joint inflammation lasting six weeks or more without a known cause, in children under the age of 16. Most patients have blood tests, x-rays and scans to confirm no other cause of the inflammation before their diagnosis. At present, there is no cure for Juvenile Idiopathic Arthritis. All current treatments seek to reduce the symptoms of JIA, but are not a cure. Whilst these treatments have beneficial effects in reducing pain and inflammation, and provide some protection against long-term joint damage, they come with their own side-effects and impinge on long-term health of children taking these medications. In around half of all cases, children go into spontaneous remission. But in the other half, they are confined to taking powerful drugs long-term, with all the side-effects and complications that causes.
And despite the number of children with JIA, many people remain unaware that children can get arthritis as it is often thought of as a disease afflicting the elderly.
Juvenile Arthritis Research
Trinity’s father, sadly, can’t make her Christmas wish come true – however, he is trying his best.
At the start of 2018, Trinity’s father, Richard Beesley, founded Juvenile Arthritis Research (JAR). JAR is a non-profit project of the Jabez Charitable Trust and has two aims: first, to find a cure for juvenile idiopathic arthritis, and secondly to increase awareness of the condition. His background is in biomedical research, and he works closely with leading researchers and healthcare professionals whilst working independently to join the dots between related medical fields to find the clues that will lead to a cure.
JAR is also raising awareness of JIA, because early diagnosis leads to better clinical outcomes. Yet for around 5% of children with JIA, diagnosis took more than 3 years from the point of first contacting a health professional. Increasing awareness amongst doctors will help improve diagnosis times, helping to improve the health of children with JIA.
You can find out more about Juvenile Arthritis Research and support them at www.jarproject.org.