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The Full 80 - Jamie's story

Community | 9th April 2021

Like most eight-year-olds, Jamie Jones is an active, lively little boy who enjoys school and playing with his friends. At the weekends he loves playing rugby with his teammates for Mountain Ash RFC U9’s. 

At the age of two Jamie developed a limp which resulted in him falling over constantly and causing him pain at night disrupting his sleep. After many visits to the hospital an X-ray revealed an abscess at the bottom of his tibia bone, which experts later thought was osteomyelitis, a bone infection, after two operations and weeks of treatment he was on the road to recovery.

Unfortunately, in March 2016 Jamie started experiencing pain in his legs and knees which showed a tug lesion. Jamie had many nights crying in pain unable to walk upstairs. A year later, Jamie was struggling to stay active, he started limping from the pain and falling over again, this time, with little delay, x rays, mri's and bone scans confirmed he had inflammation of sacroiliac joint. It’s at this point he was diagnosed with a rare auto immune disease - chronic recurrent multifocal osteomyelitis (CRMO) it is a rare and serious disease. It involves inflammation of one or more bones and can be chronic. Over these years Jamie has had many treatments ibuprofen daily, steroids and pamidronate, he has had lesions in many places over the years including the tibia, femur, pelvis, sacrum Joint, ribs and hips.

In 2019 Jamie sustained an eye injury from a ball, his eye was getting swollen, and nothing was helping, so after more scans doctors decided to give Jamie a year of Humira (injections every 2 weeks) after 9 months the eye was getting worse. Doctors give him steroids which wasn't helping either, so decided to do a bone biopsy. On 28th Jan 2021 the family were told the biopsy showed he had LCH cancer (Langerhans cell histiocytosis) in his eye socket, he had a chemo port put in and straight away started chemotherapy and steroids every week.

Jamie’s coaches and members of Mountain Ash RFC committee wanted to show their support to Jamie and his family and decided to organise a fundraising event, something which would not only generate financial donations but something where the whole club and wider community could get involved with to show solidarity. The club raised a significant amount of money last year for the NHS by collectively walking/running/cycling 1000 miles in ten days so decided to set the bar even higher! 

The British & Irish Lions are touring South Africa this summer and at the time of discussing fundraising ideas it was unclear whether or not the event would go ahead due to the ongoing pandemic and travel restrictions. It was therefore decided to walk/run/cycle the equivalent miles of Mountain Ash to Johannesburg in 16 days, a staggering 8172 miles! 

The #joburg4jamie challenge has generated tremendous support from everyone involved with Mountain Ash RFC and members of the local community and this response has been uplifting to Jamie and his family, it really has shown the true meaning of a rugby family and everyone continues to push on with generating as many miles as they possibly can each day to get us to Johannesburg. 

The challenge started on Friday 26th March and the effort from everyone has been overwhelming. We reached Johannesburg on day seven of the challenge and decided to therefore turnaround and head home back to Mountain Ash. To date we have collectively racked up over 15,000 miles and are less than 1,000 miles from home!

We are extremely grateful to the Cardiff Blues for their generous support in our quest.

For more information on the Full 80 Challenge, please click here.