Emma and James Whittaker from Pitstone, Buckinghamshire, have been diagnosed with Fanconi Anaemia, a rare genetic disease, and are likely to need a bone marrow transplant. There is a matching donor for James, aged 3, on the bone marrow register but currently there is no suitable donor for Emma, aged 5. Rachelle and Malcolm, Emma and James’ parents, are appealing for people to join the bone marrow register.
Rachelle says, ‘Fanconi Anaemia is an extremely rare condition and for both of our children to be diagnosed is heart-breaking. Emma and James are both very normal lively children. We have told them that they have special blood and that’s why they have to see the doctors and have regular check-ups.
‘There is a 90% chance that Emma and James will need a bone marrow transplant in the future to survive. It could be in five years or it could be in two months. When that time comes, we will need two bone marrow donors to do an amazing thing; to step forward and give our children the best chance at survival. Currently, there is no one on the register in the entire world who is a match for Emma. We are appealing for everyone aged 16–30 to step forward and join the register. You could be that person who is a match for Emma or for one of the other people out there who is desperately waiting for a match.’
Rachelle is supporting an Anthony Nolan donor recruitment event being held at Watford Woodside Leisure Centre on 2 July from 4.30-8pm. Everyday Active centres in the area are hosting a donor recruitment drive after a member of staff was diagnosed with blood cancer.
Lynsey Dickson, Regional Recruitment Manager at Anthony Nolan, says, ‘We can currently only find a suitable donor for half of the people in desperate need of a bone marrow transplant. Rachelle and Malcolm’s situation shows just how unfair this is: there is only a matching donor for one of their children. We can change these odds by recruiting young healthy men to the register. This will enable us to find more donor matches for people like Emma.’
Find out more about joining the register.
Follow Emma and James’ story on Twitter and Facebook.
Photograph by Cassie.
For the latest data and information, visit our
Facts & Stats page