A FIVE-YEAR-OLD Smallfield schoolgirl with a rare medical condition is about to have her 60th blood transfusion.
Just 97 people in the UK have Diamond Blackfan Anaemia (DBA), a rare genetic condition which causes the bone marrow not to produce red blood cells – and only 1,200 people in the world have the condition.
Jo and Gordon Rose of Copse Close in Horley are the parents of Amie, who attends Redehall Preparatory School in Redehall Road, and are trying to raise awareness and money for research into DBA.
Their world was shattered when they were told that their six-week-old daughter was on the verge of a cardiac arrest, and needed an emergency blood transfusion.
Since then, Amie has had blood transfusions every four weeks, and it is a constant battle to make sure her body doesn't get overloaded with iron – which could make her vital organs shut down.
The next step is a bone marrow transplant, which may end the need for her to have regular blood transfusions – but she may have to wait two years before she is healthy enough to undergo the procedure.
Mrs Rose, 44, said: "At the moment, the real threat to Amie is overloading her body with iron as a side effect of the blood transfusions.
"She is due to have her 60th very soon, and at some point her body could turn around and say 'I can't deal with this anymore'. We don't know where we're going to be in five years. We're just trying to make the most of it.
"If you saw Amie lined up with the other children you wouldn't notice there was anything wrong. But we have to be careful because she has to wear a pump with a needle in her arm six days a week. "As she's getting older she's asking more questions, like why can't she join in PE with the other children?"
Mr and Mrs Rose are organising a black tie event in Copthorne in March to raise money towards research for the charity DBA UK.
Mrs Rose added: "We are very lucky that there is a specialist at St Mary's Hospital in London who deals with DBA.
"People come from all over Europe to see him. Even the doctors at Great Ormond Street Hospital didn't know how to deal with Amie's condition, which shows you how rare it is.
"Because the condition affects so few people, there are no government grants or funding available.
"The cost for the research undertaken by DBA UK for one year is £60,000, so we're hoping people will come along and support the charity at the ball."
The Rose Charity Ball in Aid of DBA UK is taking place on March 7 at the Copthorne Effingham Hotel from 7pm. There will be live entertainment provided.
For bookings contact Jo or Gordon on 01293 825722 or e-mail roseball.dbauk@outlook.com
