THE family of a girl battling a deadly blood disorder are pleading for help after her only donor match in the world pulled out at the last minute.
Evie Hodgson, eight, who suffers from aplastic anaemia – also known as bone marrow failure – was due to have a transplant this month but her donor backed out.
Evie Hodgson, eight, was diagnosed with aplastic anaemia[/caption]
Her mum, Tina Hodgson, says the chances of finding another donor are so slim that doctors are now planning a different course of treatment.
The youngster from Sleights, Whitby, was rushed to hospital with a rash during the coronavirus lockdown.
She was diagnosed with aplastic anaemia in May.
Amazingly, a match was found and preparations were underway for surgery.
But just weeks before the transplant, the donor pulled out and the family’s “world fell apart, again”.
However, the courageous pupil at Fyling Hall School, in Robin Hood’s Bay, is determined to battle the disease.
Evie’s mum told how the family received the diagnosis: “In the middle of the Covid lockdown, Evie woke up one morning with a red pin rash all over her body.
“We first thought it was meningitis because it wasn’t fading under a tumbler but she had no other symptoms.”
The family contacted the NHS 111 service and were advised to take Evie to Whitby A&E.
“The doctor took one look at her and thought it was sepsis,” Tina said.
“She had IV antibiotics there and we were rushed to James Cook University Hospital by ambulance.”
Little Evie with her family[/caption]
Evie then had blood tests at the Middlesbrough hospital which revealed her platelets were low – but her red and white blood cells were fine.
She was diagnosed with a platelet condition – known as ITP – and told she would need to return to hospital once per week for tests.
But when the family returned to Teesside one week later, tests revealed all Evie’s cell counts were low.
The youngster was then immediately transferred to Great North Children’s Hospital in Newcastle.
Tina, who works at RAF Fylingdales, said: “Deep down we thought this is quite serious and I think everyone though it was leukaemia.”
In May, further tests revealed that Evie didn’t have cancerous cells – and not many cells at all – as doctors broke the devastating news that Evie was suffering from aplastic anaemia.
Evie is determined to battle the disease[/caption]
As the family received the diagnosis, Tina said: “As parents we said thank god it isn’t cancer but then the nurse said this is just as bad, it is a lot harder to treat.
“Our world fell apart at that point.”
Aplastic anemia is a condition that occurs when your body stops producing enough new blood cells.
Around 100-150 people are diagnosed in the UK each year.
Treatment can include immunosuppressants, chemotherapy, blood transfusions, or blood and bone marrow transplants.
Evie’s first option was a bone marrow transplant as a cure, but mum Tina, dad Andy and Evie’s five-year-old brother William were not a match.
The next step was to search the international database for a bone marrow transplant.
And luckily, Evie’s perfect donor – the only one in the world – was found and preparations for surgery were scheduled.
Evie had one of her ovaries removed, dental work carried out and even chopped off her Rapunzel-like locks to donate to The Little Princess Trust.
Speaking through tears about her brave little girl, Tina, 37, said: “Evie was always that girl at the hairdressers that wanted her hair like Rapunzel.
“When we’ve been in the hospital she has saw her friends with no hair.
“One day she said to me ‘will I lose my hair?’. So I said probably, yes.”
Evie then made the courageous decision to chop off her hair and is now sporting a beautiful curly bob despite fighting her own battle.
The brave youngster, who is also a keen singer, has also been entertaining other patients and staff in the hospital with her talents.
The family’s second devastating blow came when Evie was in hospital and doctors broke the news the donor had pulled out.
The girl even cut her hair in preparation for the transplant[/caption]
“It was like the diagnosis all over again. We will never know why they pulled out,” Tina added.
Evie is due to start a three-month immunosuppressive therapy treatment which aims for her body to generate bone marrow.
As the treatment has only a 60 per cent success rate, Evie’s family are now raising awareness about joining the stem cell donation register.
Speaking about the importance of signing up, Tina said: “I was shocked to learn that only 2 per cent of the UK population is registered on the blood stem cell register.
“It is such an easy procedure, similar to giving blood.
“It is so easy to get on the register and donate if you are a match.
“If people are made aware they could save someone’s life. It isn’t just Evie, there are so many families waiting for a donor.”
You can join on the DKMS register, here, or through Anthony Nolan register, here.
A dedicated Facebook page has been set up to follow Evie’s journey with aplastic anaemia – you can follow her progress here.