13 year old Sapphire Timson
Donors can improve the quality of life of people like Sapphire, who suffer from the most commonest and severest form of the Haemoglobin disorder of SCD (Sickle Cell Disorder)
SCD affects people of African, Caribbean, Eastern Mediterranean, Middle Eastern and Asian heritage
Sapphire had her first crisis age 6 months. She has suffered two bouts of Acute ‘Chest Syndrome' or double Pneumonia, one of the commonest severe crises a HbSS sufferer can have, often leading to fatality if not treated in time
Treatments include strong antibiotics, blood transfusions and induced coma to ease breathing without pain. At age 5 she started to complain of severe headaches. She was first prescribed glasses to correct her vision but headaches continued and after an MRI scan at Kings Hospital aged 10, tests showed she had several Cerebral/Silent infarcts (transient ischemic attacks, TIAs) due to lack of blood flow to the brain
Sapphire had home study to monitor her sleep patterns to see if she stopped breathing - Sleep Aponea was diagnosed after seeing a Ear, Nose and Throat specialist it was established that her sleep Apnoea was not obstructive OSA and central CSA due to damage to the part of her brain telling her body to breath
Every year she has a TCD - Trans Cranial Doppler scan to monitor the blood flow to her brain to prevent a full blown stroke. She is currently on Hydroxyurea a form of Oral Chemotherapy and her consultant has discussed the possibility of a Bone Marrow Transplant; if this is to be done it has to happen before she is 16 years of age in 2016
Sapphire has mobility problems, a non-functional spleen, asthma, Ischemic cardiomyopathy (due to the extra work her little heart has to do to keep her body going), Cerebral/Silent Infarcts (transient ischemic attacks - TIAs), enlarged liver, daily aches & pains after activities that most kids her age enjoy
On top all of this she has to take an array of medications and a lot of hospital visits & medical test
Sapphire has 2 older brothers but neither are a bone marrow match.
Words by courtesy of Sapphire's mother Kafayat Timson
‘Spit & Commit' Be the ONE to register and be a lifesaver
Please CLICK HERE to read about the 2 donation procedures
CLICK HERE for details of where to register as a donor
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