By Angela Francis | Project Leader
Clare and Ben have three children: Connor, 11, Esther 7 and Zachary, a surprise baby, is 18 months old. Ben works full time and the family have no relatives nearby. When Esther was six weeks old a fairly normal family picture suddenly became very far from normal. Called for a routine blood test Esther was diagnosed with Diamond Blackfan Anaemia (DBA), a disease so rare that only 125 people in the country have it, each of them with a unique set of symptoms. Progression of the disease is different for each sufferer so it’s not possible to predict the future treatment path.
For Esther, steroid medication is currently working, stimulating the bone marrow to produce more red blood cells, but whether this can be continued is not known. The DBA syndrome also resulted for Esther in profound deafness in one ear, affecting her education and daily life. As DBA is so rare even the medical specialists are not fully informed about the disease so Clare’s contact with other parents of DBA children and FaceBook groups is especially important. She needs to be on the alert for any changes in Esther’s condition which might mean the treatment is no longer effective.
A further blow for the family came when, at three months, Zachary was also diagnosed with DBA. Both Ben and Clare were tested but not found to be carriers. This was a complete shock and as Clare says, knocked the family off course. Unlike his sister, Zachary didn’t respond to steroids, didn’t sleep and didn’t gain weight. Admitted to hospital again at five months the future was unknown.
At this point Clare contacted Rainbow Trust Children’s Charity. Short of sleep, with deteriorating mental health, she had reached her limit. They met Christina and Nicki, Family Support Workers, who provided practical help by coming to hospital appointments with them - with three children this was invaluable – but, equally important, they were able to give Clare especially the emotional support she so desperately needed. Looking after two children with complex needs and an 11 year old had left her isolated. In her words “with Nicki’s help, we feel human again, having someone there for just us, somebody who’s independent and professional who understands. It really does fill that gap when you have a family in crisis.”
Rainbow Trust’s Family Support Workers can give more than just logistical help, they can also provide that emotional support that is so crucial for families struggling to stay afloat.
By Angela Francis | Project Leader
By Jenny-Anne Dexter | Project Leader
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