AFTER 16 years of living with a rare disorder and having no idea what it was – Rebecca Campbell was finally diagnosed.

Now friends and family are rallying around to raise funds and awareness in support of Rebecca’s condition.

The 16-year-old, from Edenfield, has the rare chromosomal disorder called 4q deletion 21.1-21.23.

Now her mum Janet Campbell has decided to take on a triathlon to raise money for the Unique charity, which works to inform and support anyone affected by a rare chromosome disorder.

Rebecca has severe learning difficulties, no verbal communication and limited use of simplified sign language. She has low muscle tone, limited mobility and recently underwent major spinal surgery to correct severe scoliosis.

“Rebecca was a floppy baby. She didn't reach milestones at the same rate as her peers. For example, she crawled at two and a half years and walked at four years in reception, after being bribed with chocolate buttons,” explained Janet.

Nobody else has been diagnosed with Rebecca’s particular deletion, but there are others on the same chromosome with similar numbers affected – but Janet said there was still very little known about the disorders which are only just being discovered.

On diagnosis, a whole new chapter opened for Janet and her family and it has helped with the understanding of the condition.

They were put in touch with Unique, opening up support networks worldwide and informing them of families of children with similar disorders.

Janet added: “It took 16 years for Rebecca to be diagnosed. Hopefully it won't take this long for others to be diagnosed thanks to Unique's ongoing work.”

Family friends are collecting sponsorships for the triathlon in Preston on May 16, which will include a 30-length swim, 10-mile bike ride and a 5K run. The challenge follows Janet's successful completion of a 21-mile Guild Wheel cycle around Preston last year, alongside Rebecca’s cousin Hayley Wood.

Janet, her friend Karen Wylie, and their daughters Shona, Josie and Evie, recently joined up with Rammy Runners to help with their training for the event, and they also received personal coaching from Bury sprinting legend Barrie Kelly, who competed in the 1968 Olympic Games.

All money raised through sponsorship will go towards Unique. To donate: go to www.justgiving.com/rebeccastryingtriathletes