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Family of eight-year-old with rare blood disorder call for more lifesaving stem cell donors

The family of an eight-year-old girl with a rare blood disorder, are calling for more people to sign up as potential stem cell donors, with blood cancer charity Anthony Nolan. They have been told that there is currently no one on the stem cell donor register who is a perfect match for their daughter, after her only match was unable to go ahead with the donation.

Evie Hodgson, who is eight years old and from Whitby, North Yorkshire, loves singing and going on bike rides with her family. She was diagnosed with aplastic anaemia, a rare and serious blood disorder, in May this year after developing a rash. Doctors originally thought that she may have leukaemia but soon discovered that she had severe aplastic anaemia, and told Evie’s family that the rare blood disorder is equally as serious and can be even more difficult to treat than blood cancer.

Tina, Evie’s mum, said: ‘We are quite an active and health conscious family and we were enjoying the slower pace of life during lockdown, going out for bike rides and walks.

‘One day I noticed a pin prick rash on her skin so I phoned the NHS helpline, which was difficult as they were so busy due to coronavirus. When I finally got through, I was told to take Evie to A&E as they thought it may be sepsis.’

Tina took Evie to Whitby A&E and from there they were sent in an ambulance to James Cook hospital in Middlesbrough. Evie was diagnosed with ITP, a platelet condition that is quite common in children. They were told that she would need weekly blood tests and that the condition would probably resolve itself.

However, just a week later, Evie’s rash had spread and her weekly blood test revealed that all her blood counts were low. She was transferred to Newcastle hospital, where doctors told Tina that they suspected Evie might have leukaemia.

Tina said: ‘Evie had a bone marrow biopsy which revealed that she had severe aplastic anaemia, I said ‘oh I’m glad it’s not cancer’ and the consultant looked at me and said ‘It’s just as serious as cancer.’  

‘A stem cell transplant is her best chance at cure, so that’s when Anthony Nolan and a stem cell donor were first mentioned.’

Evie’s younger brother, William, who is five years old, was tested to see if he is a stem cell match but unfortunately, he is not a match for his sister. Only one in four people will find a match within their family, the rest will rely on Anthony Nolan to find them that special stranger.

A perfect match was found for Evie in (Germany?) and in preparation for her transplant she donated her hair to The Little Princess Trust, and also had to have an ovary removed.

Tina said: ‘Evie looked at me and said ‘Mummy will I lose my hair? Can I donate it?’ That’s just the kind of girl she is, a gorgeous, caring girl.’

Devastatingly for Evie and her family, shortly before the transplant was supposed to go ahead, they discovered that Evie’s only perfect match donor was unable to go ahead with the donation.

She is now having immunosuppressant treatment, however they will have to wait three months to see if the treatment is working and even if it works, the chance of relapse is high, which is why a transplant is the best option for her.

Tina said ‘Children are so strong, Evie is just getting on with it. She sees her friends going back to school but she just accepts that she isn’t able to.

‘She is quite a good little singer and has even been performing on the ward for the other children. A senior nurse said that she had been working on the ward for 17 years and this is one of the highlights of her career.’

 ‘I want to create as much awareness as possible about the stem cell register. Even if it doesn’t help find a match for Evie, there might be other people out there who join the register and find a match because of Evie’s story.’

Anthony Nolan recruits people aged 16–30 to the stem cell register as research has shown younger people are more likely to be chosen to donate.

They also carry out ground-breaking research to save more lives and provide information and support to patients after a stem cell transplant, through its clinical nurse specialists and psychologists, who help guide patients through their recovery.

It costs £40 to recruit each potential donor to the register, so Anthony Nolan relies on financial support.

Rebecca Pritchard, who leads the Register Development team at Anthony Nolan said: ‘We are doing everything we can to support Evie’s family and their search for a donor, during this difficult time.

‘Every single person who signs up to the register has the potential to give hope to someone, like Evie, who is in desperate need of a lifesaving stem cell transplant.

‘We’re particularly calling on people young men aged 16–30 to join the register. Young men provide more than 50% of all stem cell donations but make up just 18% of our register. Together, we can work towards a future where nobody is waiting for their match.’

 

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