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Talleulah was diagnosed with Metachromatic Leukadystrophy Disorder (MLD) in June 2014 when she was just 6 years old. This means she was born lacking the ARSA enzyme which results in the build up of sulfatides (debris) in the tissues which ultimately leads to the destruction of the myelin sheath which is the protective covering around her nerve fibres in her body. If the sheath is damaged, the brain and periferal nervous system (mobility) cease to function.
Since the age of 2, Talleulah's family have witnessed a deterioration in her mobility and behaviour, until they finally received a diagnosis and thankfully were introduced to a clinical trial in Milan which Talleulah was accepted on in December 2014. Her own stem cells were extracted and genetically modified to deliver intravenously, an over expressing ARSA enzyme to the nervous system by route of the blood. She remained in isolation for 47 days and as an outpatient for a further 90 days in Milan, and is currently still there. The enzyme will start its processes approximately 6 months after its delivered so the disease will carry on it's destruction.
Post treatment, Talleulah requires therapy everyday as her walking has worsened and muscle strength deteriorated. She has a tremor which has become more significant, causing her frustrations so she will also need occupational help. The family will have to make drastic changes to their home to make her life more comfortable, for example going to the toilet is extremely problematic. Talleulah has to work 100 times harder to do very simple tasks that we take for granted, so is easily exhausted.....but she's alive and smiling!
So I've been putting in the miles for an extremely important and worthy cause and the big day is now only approx 6 weeks away. Any sponsorship will be extremely appreciated - it will really help me get round those 26.2 miles!
Thank you for your support
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