West Lynn family halfway to £10k target for Jonny's dream trip

A West Lynn family are halfway to a £10,000 fundraising target for a 14-year-old boy diagnosed with two types of leukaemia.

Terrington St Clement student, Jonny Rains, has spent the last three months undergoing intensive chemotherapy but his family hope to take him on a bucket list trip to Disneyworld Florida once his treatment is complete.

His aunt, Melanie Day, set up a fundraising page and within a few days the family have already raised £4,670 of the £10,000 goal.

His mother, Teresa Rains, said: “It’s been overwhelming. I can’t thank everyone enough, it’s just mind-blowing that even in such hard times people have given so much.”

Jonny Rains, who turns 14 today, started showing symptoms with a full body rash in June last year but doctors told his mother, Teresa, he had eczema and prescribed a steroid cream.

It was only when the Terrington St Clement student started falling asleep in class that his mother contacted the Queen Elizabeth Hospital worried he might have glandular fever.

“We were really shocked when he was diagnosed with two types of leukaemia, one of them is normally found in older people,” said Teresa, who works as a carer.

“He’s a real trooper, he’s always got his thumbs up. He’s really been keeping me strong, I haven’t had a breakdown yet, but I’m sure it will come.”

Jonny was diagnosed in September 2020 with Philadelphia Chromosome positive acute lymphoblastic leukemia in the middle of the pandemic, despite first contacting doctors several months earlier.

Teresa said: “The pandemic has made everything harder. With the doctors misdiagnosing his rash, it could have saved us a few months.

“If I hadn’t pushed for treatment, it’s scary to think how this could have gone.”

While Jonny’s prognosis for recovery is good, he has to undergo intensive treatment which has meant spending the last three months in hospital.

Teresa said: “We’ve only been home for three days in three months. It’s a very harsh treatment that normally takes three years, but he’s having it in 2.5 years.

“He’s had two rounds of chemotherapy so far, he’s also on heavy steroids, and will spend the next year and a half on maintenance at home.”

“I really can’t fault the staff at the Queen Elizabeth Hospital and Addenbrooke’s, they’ve been amazing,” said Teresa.

Jonny’s time in hospital during the pandemic has meant spending several months away from family and friends, and missing school.

Teresa said: “He’s missed out on so much, he’s supposed to be sitting his GCSE’s, and there’s going to be a lot of stuff he’s not able to do when he goes back to school.

“He can’t really walk at the moment, he’s lost a lot of muscle which has been hard because he can’t even get to the toilet without needing a wheelchair.”

Jonny’s family were awaiting confirmation that he would be allowed to return home today following treatment.

His mother said: “He’s not been in a good place the last few weeks, he’s just missing his dad, sister and dog.

“It will be good to get him home to recharge but it’s still a long road ahead.”

The family hope to take Jonny to Disneyworld for his 16th birthday when he is expected to have completed treatment, but need help to cover the costs of insurance for the holiday.

If you would like to donate, visit: https://www.gofundme.com/f/jonny-rains-trip-of-a-lifetime-16th-birthday.