A couple whose son died of a rare blood disorder a week after his baby brother was born have pledged to raise £10,000 in his memory.
Paul and Andrea Scholes’ world fell apart when two-year-old Oliver, pictured left, lost his battle with haemophagocytic lymphohistiocytosis in June.
Now they hope to turn their grief into something positive by supporting the Histiocytosis Research Trust which funds ground-breaking research into the condition which took Oliver’s life.
Andrea, of Kesteven Road, Stamford, said: “No-one expects to have to say goodbye to their child and no-one should ever have to.
“Nothing we do will bring Oliver back or change how much we miss him, but hopefully by supporting the charity we can make a difference to other people facing this illness.”
Andrea, a reporter at the Rutland and Stamford Mercury, was eight months pregnant when Oliver first became ill. He was suffering with an ear infection that didn’t get better despite having antibiotics.
He was admitted to Peterborough City Hospital on May 26 with a 40 degree fever and later transferred to the children’s intensive care unit at Leicester Royal Infirmary where his health deteriorated.
While the doctors were carrying out tests, Andrea, 29, went into labour and was admitted to the same hospital. Toby was born at the hospital three weeks early on May 30.
Paul, 29, a global product engineer at Cummins Generator Technologies, said: “It was difficult having a new born son in one part of the hospital and a seriously-ill son in another. Whoever I was with, I always felt like I should be with the other one.
“It was hard to celebrate Toby’s arrival when Oliver was so ill.”
After many blood tests, scans, x-rays and a lumbar puncture test, the doctors diagnosed a rare genetic condition which affects the body’s immune system. In Oliver’s case, his immune system was working too hard to fight an infection and was damaging the rest of his body as a result.
Andrea said: “Toby was only two days old when we got the diagnosis for Oliver and the doctors explained that he would eventually need a bone marrow transplant.
“They also had to tell us that because Oliver’s condition was genetic, there was a 50 per cent chance Toby would have it too. If he did, he would also need a bone marrow transplant and if he didn’t, he would be the most likely match for Oliver. It was a lot to take in.”
Thankfully, Toby’s test results were clear.
Oliver started steroid and chemotherapy treatment in preparation for a bone marrow transplant but the inflammation in his body became too much and he died in hospital on June 5.
Paul said: “When Oliver was diagnosed we knew it would be a long road ahead and that we would be spending many months in hospital with him, but we were ready to do whatever it took to make him better.”
Andrea added: “The day before he died, Oliver seemed to have turned a bit of a corner but when our phone rang in the hotel room at 11pm that night, I just knew what was coming.
“It was a long, silent walk back to the hospital to hear the news we had been dreading.”
Oliver spent his last day being visited by his grandparents, aunties and uncles who were all supported by the team of nurses.
Andrea said: “The nurses who looked after Oliver were amazing and we would never have got through the last day without them.”
The family are also thankful for the support from the Reverend Bob Mackrill and funeral director Andrew Woodhouse.
Paul said: “He was a typical toddler who loved Thomas the Tank Engine, digging in the garden and looking for mischief. Every day without him is hard. In the first few weeks it felt like he would be coming back and even after six months it sometimes still does.”
Histiocytosis Research Trust
Since Oliver died, his family and friends have already raised some money for the HR Trust.
Paul said: “What HLH patients need most is more understanding of their condition and a more effective cure, so the best thing we can do is raise money to help the trust achieve that.
“We have been amazed by how much support we have already had.”
The next fundraising event is on Sunday when a team of 14 people will take part in the Santa fun run in Burghley Park.
The Stamford Pantomime Players have offered to donate half of the money raised from their bucket collections at this year’s performances of Puss in Boots to the charity and Andrea has signed up to run the Bupa London 10,000 in May next year.
The family plans to organise a series of events throughout 2013 to help reach the £10,000 target.
Anyone interested in getting involved can contact Paul on 07729 981024 or e-mail email@example.com.
For details about the charity, visit www.hrtrust.org.