Mother's anguish as son she hoped would keep her sick daughter alive is also diagnosed with same life-threatening blood disorder
Emma Whittaker, 4, and her brother James, 3, have Fanconi Anaemia
The rare blood disorder can lead to
bone marrow failure and cancerEmma was diagnosed first and it was hoped James' bone marrow could help
But family's hopes dashed two months later when he was also diagnosed
They are now desperately searching for bone marrow donor to save Emma
when her mother noticed she was bruising easily.
Ms Emberton said: 'If I wasn't a pushy mother then we would never have found out she had FA. We might never have known until she got really poorly.
'The condition is so rare I've had to explain it to doctors and give them the standards of care documents.'
Emma's blood white and blood cells and platelets count has stabilised but doctors have advised she will need a bone marrow transplant in the next few years.
James, who was also born with one kidney, was diagnosed with the same condition last month.
are fewer than 150 sufferers of FA in the UK – with an incident rate of
just three in one million – and research and detailed information about
the condition is patchy.
Ms Emberton and Mr Whittaker, 53, who are both FA carriers, are now urging people to join the Anthony Nolan bone marrow register.
While a bone marrow donor has been found for James, the family are still searching for a match for Emma, who will need a transplant in the next few years
James (above), who was born with one kidney, was diagnosed two months after his sister
The charity is dedicated to saving the lives of people with blood cancer who need a blood stem cell or bone marrow transplant.
There are currently over 450,000
people on the register, but the charity can still only find a match for
around half the people who come to them in need of a lifesaving
Ms Emberton said: 'Registering is really simple – people do not realise. All you have to do it spit in a pot and send it off and you are on the register.
'My mother is Iranian and the doctors think that there may be a match in the Iranian community so she is going into community centres to try and get the word out.'
Jeannie Dalgleish, from support charity Fanconi Hope who has a daughter with the condition, said it is unusual for more than one child in a family to have FA.
She said: 'Genetic counselling is available for parents who have had a child with FA, but the condition is normally not diagnosed until children are eight.
'Looking after one child with the condition is hard, so it is a very difficult position to be in to have two children with it.'
To register on the bone marrow register go to www.anthonynolan.org/register