Running for Zahra
Donation protected
Zahra was born in South Africa on 9th of May 2016. Shortly after birth doctors noticed she was 'floppy' and she was rushed to ICU as it became clear that something more serious was wrong.
A muscle biopsy at 8 weeks old indicated that Zahra had mitochondrial disease, a progressive and life limiting disease that affects how our bodies produce the energy needed to sustain life.
Children born with severe symptoms rarely live into adolescence and there is currently no cure.
Zahra's parents were advised to take her to the UK or the US for specialized genetic testing. They saught the help of the Wellcome Trust for Mitochondrial Research based in Newcastle.
So far initial genetic testing has yielded no results and so Zahra has been accepted into a wider genetic research program. Not having a diagnosis for Zahra means that there is currently no prognosis.
We don't know if she will live for very long or what her quality of life will be. At the moment she is doing well and appears to be getting slowly stronger, but at 16 months she still cannot stand, crawl, walk or lift her head off the floor. She is also vulnerable to illness and is regularly admitted to hospital.
Having just moved to Cairo, Adrian began looking for a marathon that he could join to help raise funds for Zahra. He found the 100km Pharonic race. First initiated back in 1977 after the Egyptologist, Ahmed Moussa discovered a piece of rock telling the story of Pharaonic soldiers running a race of 100 Km.
Adrian is already training and will take on this mammouth challenge on November 17th 2017 to support his friends and their beautiful daughter.
In the last few months Zahra has started to sit up by herself and hold her head up, a HUGE step in the right direction. Her beautiful smile and relentless determination keeps us all resolved to do our very best for her.
Please support us in raising funds to provide hope for Zahra and her family. Just a little bit from you could mean a lifetime of difference to Zahra.
Thank you x
A muscle biopsy at 8 weeks old indicated that Zahra had mitochondrial disease, a progressive and life limiting disease that affects how our bodies produce the energy needed to sustain life.
Children born with severe symptoms rarely live into adolescence and there is currently no cure.
Zahra's parents were advised to take her to the UK or the US for specialized genetic testing. They saught the help of the Wellcome Trust for Mitochondrial Research based in Newcastle.
So far initial genetic testing has yielded no results and so Zahra has been accepted into a wider genetic research program. Not having a diagnosis for Zahra means that there is currently no prognosis.
We don't know if she will live for very long or what her quality of life will be. At the moment she is doing well and appears to be getting slowly stronger, but at 16 months she still cannot stand, crawl, walk or lift her head off the floor. She is also vulnerable to illness and is regularly admitted to hospital.
Having just moved to Cairo, Adrian began looking for a marathon that he could join to help raise funds for Zahra. He found the 100km Pharonic race. First initiated back in 1977 after the Egyptologist, Ahmed Moussa discovered a piece of rock telling the story of Pharaonic soldiers running a race of 100 Km.
Adrian is already training and will take on this mammouth challenge on November 17th 2017 to support his friends and their beautiful daughter.
In the last few months Zahra has started to sit up by herself and hold her head up, a HUGE step in the right direction. Her beautiful smile and relentless determination keeps us all resolved to do our very best for her.
Please support us in raising funds to provide hope for Zahra and her family. Just a little bit from you could mean a lifetime of difference to Zahra.
Thank you x
Organizer and beneficiary
Adrian Bennett
Organizer
Gemma Norrington-Davies
Beneficiary
