REBECCA Russell has Diamond Blackfan Anaemia (DBA) – a condition so rare that she is one of only 125 people in the UK – 600 worldwide – with the incurable blood disorder.
However, despite having to cope with lifelong treatment, the 15-year-old – backed by her loving family and friends – insists she will go on living life to the max.
A keen and talented member of the Claire and Catherine Bonar School of Dance in Torrance, Rebecca’s just like any other smiling, happy, teenage girl with a host of pals and a huge love of music and movies.
But every five weeks, the Lenzie Academy fifth year pupil, who wears a blood pump to bed each night, goes to Yorkhill children’s hospital for a blood transfusion.
She told the Herald: “The nurses at Yorkhill have become like a second family to me.”
DBA is so rare that mum Lorna says she’s drawn blank looks from doctors when she’s mentioned it.
The blood condition is caused by a failure within the bone marrow which results in a lack of red blood cells – necessary to transport oxygen around the body.
Lorna said: “The majority of cases are found in infancy and since she was born Rebecca has been attending Yorkhill for treatment.”
Along with paleness of the skin, and a higher susceptibility to leukemia than the rest of the general population, one of the major symptoms of DBA is decreased energy.
Dad David said: “She gets really fatigued and tired towards the end of the five-week cycle between blood transfusions.
“She’s pale at the best of times, but whiter than white the nearer her next transfusion and she’ll say ‘I can’t go to dancing this week’.”
Once considered a terminal childhood disease, DBA is now manageable with sustained treatment.
The family, from Kirkintilloch, have raised thousands of pounds for Yorkhill over the years.
As a further way of saying “thank you” for everything the nurses and doctors have done they jumped on their bikes recently along with extended family and friends – and Rebecca – to cycle laps totalling more than 500 miles around the island of Millport. The cycle has already raised more than £1,250 for the hospital.
Anyone wishing to donate can still do so at http://www.justgiving.com/David-Russell3.