Urgent stem cell plea for toddler with rare blood disorder

The family of a toddler who has spent most of his life in hospital being treated for a rare and life-threatening blood disorder have made an urgent plea for a stem cell donor.

Two-year-old Maison was diagnosed with Wiskott-Aldrich syndrome (WAS) at the age of one.

The genetic condition impacts how a child’s body fights infection, with symptoms including easy bruising, eczema, bloody diarrhoea and prolonged bleeding following small bumps or scrapes.

WAS affects almost exclusively boys – around three in every million worldwide – as it is caused by errors written into a section of DNA on the X chromosome.

Males only have one copy of this chromosome, while women have two copies, providing a back-up that makes them less likely to develop symptoms.

Because of his condition, Maison cannot play with other children and has spent most of his life being treated at Great Ormond Street Children’s Hospital in London.

Doctors have now told his mother Stella, 34, and dad Elsi, 32, that their son needs a stem cell transplant to survive.

Stella, who did not wish to share the family’s surname, said: “This is one of those things you think only happens to people on TV.”

The family, who are from Greece and Albania, are working with Anthony Nolan for their #MatchforMaison campaign, and are urging 16 to 30-year-olds to join the stem cell register.

Stella, who has given up her job as a hairdresser to care for Maison, said: “We’re not looking too far in the future right now just taking it day by day.

“All we can do is be there for Maison for every day until we get to the other end. But even then, it will take some time for us to put our lives back together again.”

Stella said her son did not have any symptoms, and she took him to hospital initially after he had an allergic reaction to something he ate.

“I thought he might have eczema because there were spots all over his body, and that’s when the doctors mentioned that it could be a blood infection,” she added.

“It was difficult for Maison to go through all those tests – they are painful for him, and he doesn’t understand why. As soon as he knows he’s going to hospital he freaks out, sometimes he cries so much he passes out – it’s incredibly stressful for all of us.”

Maison’s grandfather Dee said the last 18 months has been tough on the whole family.

He added: “That’s why we want to take this opportunity to raise awareness, not just about Wiskott-Aldrich syndrome but also about stem cell donation as a potentially lifesaving treatment for blood disorders and blood cancers.

“We hope that by working with Anthony Nolan to tell Maison’s story, lots of people will be encouraged to join the stem cell register and become potential lifesavers.”

Charlotte Cunliffe, director of register development at Anthony Nolan, said Maison’s story is “particularly poignant”.

The Anthony Nolan charity was established in 1974 by Shirley Nolan whose son Anthony also had WAS.

“The last couple of years have been really tough on Maison and his family,” Ms Cunliffe said.

“At Anthony Nolan we aim to give hope to families impacted by blood disorders and blood cancers, but we can’t do it without the selflessness of our lifesaving donors.

“Maison’s story is particularly poignant as he has the same rare blood disorder as Anthony Nolan, the little boy who inspired the creation of our charity and the world’s first stem cell register.

“If you are aged 16-30, please sign up to the Anthony Nolan register. You could be the match that saves the life of someone like Maison.”