Charlotte is 4 years old and has a rare blood disorder called Diamond Blackfan Anaemia (DBA).
This is a bone marrow failure, which means the body produces few or no red blood cells, these are essential to live.
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how you can help . . .
DBA causes a dramatically increased risk of
cancers. In some cases the only viable option is bone marrow
transplant.
Treatment consists of long-term steroid therapy or regular blood
transfusions; to date Charlotte has had 8 blood transfusions. At
present Charlotte is well and her haemoglobin level remains
stable but this could change any time.
Regular blood transfusions cause excess iron, which would kill
her if not treated.
Charlotte could be looking at additional treatment, which is
administered by a needle in the tummy, connected to a pump and
takes 12 hours a night for 5-7 nights each week.
Currently the only cure is a bone marrow transplant from a
genetically matched sibling. If there is a brother or sister who
is a bone marrow match some families are advised to consider
bone marrow transplant.
Survival rate following bone marrow transplant is far higher if
the donor is a matched brother or sister. At present Charlotte
doesn't have any brothers or sisters.
Cord blood collected at the birth of a new baby can be used for
the same procedure as a bone marrow transplant.
Our aim is to give Charlotte the best possible chance of
survival.
All monies raised will be used to pay for the treatment and
genetic screening required to have a much wanted
addition
to the family, who does not have DBA and is a genetic match for
Charlotte.
Family Fun Day
&
Craft Fair
Sunday 27th June
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