Most of seven-year-old Dean Sheikh's life has been spent in and out of hospitals, and his chances of getting a better quality of life are reduced by his Asian origin.
His body does not produce enough bone marrow and his hair and skin have the look of a very old person. He is unable to talk properly, or walk. He uses a wheelchair and his development is severely curtailed - with slowed down growth and underdeveloped brain.
On top of that, doctors discovered he had Hoyeraal Hreidarsson syndrome, which exacerbates some of the debilitating factors of his main condition. And his main condition makes him prone to a wide range of cancers as well as everyday illnesses.
He was given 12 years to live.
Dean's mother, Farah Ikbal, recalled: "They knew he needed a bone marrow transplant, but it wasn't recommended because of high mortality. But his condition got worse, with Dean spending more time in hospital. In fact he's seen by specialists at six different hospitals."
Dean's neurologists gave the green light to a transplant in February this year. The Anthony Nolan Trust searched the worldwide database, but no match was found.
Farah said: "A bone marrow transplant would cure the lack of platelets in Dean's blood, and he would not be so vulnerable to illnesses. It would give him a better quality of life."
Dean, from Notting Hill, is bright and sociable, and has learned to communicate with Makaton sign language. But his future is a great unknown, mainly because he is so unusually vulnerable to picking up a wide range of illnesses.
His mother's appeal is for all people in Dean's position.
She added: "Giving bone marrow is not something you'd think about - unless something happened to someone you knew. But it's not a painful procedure.
"And more people need to know about it - and what it means, and what it can do.
"I'm campaigning on behalf of a lot of people who could benefit from such a wonderful gift."
