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Aged five and already undergone 60 blood transfusions

Family Health 07/04/2015

© Rex Brave youngster Amie Rose has already endured over 60 blood transfusions - aged just five.

Amie suffers from diamond blackfan anaemia, which is a rare blood disease that affects only 110 people in the UK.

Every four weeks Amie has to go into hospital for a blood transfusion as her body cannot produce red blood cells.

Mum Jo, 44, from Horley, Surrey, said: "Amie was born at West Middlesex hospital and it was one of the easiest pregnancies and labours for a mother to have.

"When she was born she had a slight heart murmur but lots of babies have this and nurses told us it should go away within six weeks.

"When I took Amie back for her check-up they said she looked a bit pale and they decided to take her in for a blood test.

"The results came back and the doctors said she had to have an emergency blood transfusion as there were not enough red blood cells in Amie's body.

"We were then transferred to Great Ormond's Street hospital to have a bone marrow biopsy and told that Amie would have to have regular blood transfusions.

© Rex "Just a couple of days after being sent home Amie stopped breathing and we had to rush her back into hospital where they starved her and put back on a milk formula.

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"We were so scared of what might happen to her but we just wanted Amie to survive."

Doctors were able to stabilise Amie's iron levels but she had to have a port inserted into her chest running from her jugular vein into her heart.

Every Monday a nurse attaches a tube with a pump at the bottom to remove the excess iron from Amie's blood.

The pump stays attached to the port six days a week but the youngster is allowed to have one day without

Dad, Gordon said: "The port restricts Amie from doing any contact sport and we have to be careful when we pick her up as we could knock the needle in her port.

"The pump is essential for Amie as too much iron in the blood can be fatal and can cause major organ failures.

"Just before her fourth birthday Amie's port blocked and we were rushed into hospital otherwise it could cause pressure on the jugular.

"Surgeons had to remove the port from her left hand side and insert it on the opposite side.

"We have to make sure that the port is always clean which can be difficult as Amie has a low immune system and she contracted tonsillitis seven times in less than a year.

"She now has a course on antibiotics every two weeks that helps her fight off any illnesses."

© Rex Gordon and Jo are hoping that Amie's body will start to regulate the iron in her body so that she only has to wear the pump at night time.

Gordon, 53, added: "We are hoping that by the end of this year Amie will only have to have the pump attached a night time.

"After that we would be hoping that her iron levels stay at a reasonable rate and then she would be eligible for a bone marrow transplant.

"This procedure would 'fix' Amie and she wouldn't need to have all of this current treatment.

"It is an exciting but nerve racking experience - as there are so few people in the UK who has this illness doctors cannot predict what Amie's body will do.

"It would be nice for Amie to have the bone marrow transplant especially now she is getting older and she is starting to get remarks from other children at school.

"It is now all a waiting process to see how Amie's body will react in the next couple of years.

"You hear good stories and bad stories but we are just keeping our fingers crossed that Amie stays our happy little girl."

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