27 December 2023 , 17:10
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The parents of a little girl who was told she wouldn't see Christmas after her Leukaemia returned have managed to beat the odds and find a unique bone marrow donor who saved her.
Now little Elsie Kumar is embracing life and has even learned to ride a bike, despite all the challenges she faces. Elsie was born with Down's Syndrome and a condition called Transient Abnormal Myelopoiesis (TAM), which meant she was predisposed to developing leukaemia. But after a tough start in the neonatal intensive care unit, she somehow cured herself of TAM.
Dad Arun told the Mirror: "After a month she had beaten TAM and they took extra blood from her for testing to understand how, but we knew that she still had a one in five chance of getting leukaemia in her first two years of life." And as the family tried to move on with life, their worst fears were realised.
Arun and Elsie's mum Helen had been to a wedding in the Peak District with Elsie, when they spotted that she wasn't quite right, she had begun bruising at the slightest bump and they realised they were seeing the first signs they had been warned about. Arun added: "We woke up the next morning and drove straight to our local hospital, we didn't even stop to go home first, the next day were were in Great Ormond Street.
"I woke up every day for that first week and cried, but the doctors told us that her leukeamia was treatable, 95% of children get through it, its just those 5% where it comes back that it can have devastating outcomes for." For Elsie, having Down's Syndrome was an added complication, her chemo doses had to be lower so her body could cope, but she made a remarkable recovery and the family started to live again.
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Little Elsie during her treatment (The Kumar Family)
She spent months in and out of hospital (The Kumar Family)Her mum and dad even began planning their wedding as Elsie was now in remission. Tragically their joy was short-lived as just six weeks later, with Elsie aged just two, she relapsed. Her parents knew she was now in that fateful 5%.
Dad Arun said: "I asked her consultant if she would make Christmas and he simply replied 'No'." For Elsie it would mean stronger chemo, which her body was unlikely to be able to endure, and if she survived that she would need a bone marrow transplant, which as a mixed raced child, would be near impossible to find. All but one of her consultants were against putting her through chemo again.
Arun and Helen were given the weekend to decide if they should go ahead, or let Elsie die peacefully. Mum Helen said: "I didn't want her to suffer, it was Arun that was the strong one then, we had so many decisions to make together." Arun added: "I just knew it wasn't time to let her go, I just couldn't do it. If there was only a small chance, we had to go for it."
Parents Arun and Helen got married at GOSH (The Kumar Family)The pair decided to get married in the Great Ormond Street Hospital chapel so their daughter could be part of the celebration as they all waited for the two-year-old's treatment to begin. Mum Helen said: "Elsie dealt really well with the chemo well and we even managed to get out to the park and play on the swings. It was our honeymoon in the hospital room, us three all together, it was the most special time, the most special honeymoon we could have."
Elsie went into remission for the second time, and was the first ever child with Down's Syndrome at Great Ormond Street to achieve that feat. But now the battle was on to find her a bone marrow donor - which for Elsie, whose mum is white British and dad is from India, meant finding a mixed race match would be tough. Her parents began a media campaign to Find a Match for Elsie and managed to get 15,000 more people to register.
Elsie is happy and healthy now (The Kumar Family)DKMS - a charity fighting against blood cancer - reports: "Just 3% of the UK’s population are registered as potential donors, and only a tiny proportion of these are from minority ethnic communities. Patients from Black, Asian or other minority backgrounds have a 37% chance of finding the best possible stem cell donor match, compared to 72% for northern European backgrounds. That’s why the charity DKMS exists. The more people registering as potential blood stem cell donors, the better the chances of finding a donor for someone in need."
Remarkably a match for Elsie was a man in America, but now Arun and Helen had their biggest decision to make. If Elsie had the bone marrow donation, and follow up chemo, it would ensure the leukaemia had little chance of coming back but the transplant carried a huge risk. Arun said: "We spoke to doctors and nurses about what to do, if the transplant went wrong, the child's end of life would be awful, painful and miserable. This decision was so so hard. Many said 'why put her through it now she's in remission?'."
She has even learned to ride a bike (TIM ANDERSON)
The family are looking forward to Christmas together (TIM ANDERSON)Arun and Helen spoke to her lead consultants to talk through the options. Helen said: "I asked, if this was there daughter what would you do and he said he would go for it. Hearing him say that was what helped us decide."
Elsie had the bone marrow transplant and the tough chemo which saw her screaming in pain as she bathed, her parents said it was like acid on her skin and parts of her mouth fell away as the cleaned it to try to stave off infection, but slowly thanks to the huge blast of cells from her donor she emerged the other side. The family keep a photo of Elsie's donor, Joel Takeuchi, on their fridge as a constant reminder of what he did for them. Arun told the Mirror: "It was honestly a miracle. Her donor saved her life. He is our hero and Elsie is only here because of him."
Elsie with a Christmas card showing her donor Joel Takeuchi and his family (TIM ANDERSON)Since receiving the bone marrow Elsie has gone on from strength to strength, having not been allowed near a swimming pool for a year after her transplant, she celebrated her 10th birthday with a pool party for her friends, she is in mainstream school and has even learnt to ride a bike. She and her parents are looking forward to Christmas with their wider family.
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