I’m taking part in the Keswick2Barrow 40 mile walk, I’m part of a team raising funds for The Lily Foundation. This will be a great challenge to help raise money for this incredible charity that works to end the suffering caused by rare mitochondrial diseases through support, research and education. This charity is a huge support for children like Ruby, the daughter of my friends John and Nikki, please read her story...
Ruby was born healthy but became very anaemic at 6 months and began having 3 weekly blood transfusions as her bone marrow wasn’t working fully. It took a further 6 months to be diagnosed with Pearson Syndrome, a disease that causes a mass deletion of Mitochondrial DNA . Her Mitochondria, her batteries that power the cells, are missing a large chunk of the DNA they need to function and grow. Thanks to blood donors she was able to thrive and by the time she was 3 she stopped needing the transfusions. But, in future, Pearson Syndrome will affect her liver, kidneys, pancreas. heart, eyes, ears and her brain during her childhood. Sadly these won’t improve like her bone marrow.
We are so very fortunate as apart from hardly growing and having adrenal insufficiency she is doing remarkably well, beyond our hopes and dreams. We continue to hope that her disease progression will be slow and kind to her. We are ever grateful that we have met and gotten to know our beautiful little girl who is very loud and funny. She is the best gift and can bring you so much euphoria by just being near you.
All donations are made to the Keswick to Barrow Walk Charity. A percentage of this donation will be used to fund the cost of the walk and support local charities in South Cumbria/North Lancashire. The remainder of the donation will be donated to The Lily Foundation.
Ruby was born healthy but became very anaemic at 6 months and began having 3 weekly blood transfusions as her bone marrow wasn’t working fully. It took a further 6 months to be diagnosed with Pearson Syndrome, a disease that causes a mass deletion of Mitochondrial DNA . Her Mitochondria, her batteries that power the cells, are missing a large chunk of the DNA they need to function and grow. Thanks to blood donors she was able to thrive and by the time she was 3 she stopped needing the transfusions. But, in future, Pearson Syndrome will affect her liver, kidneys, pancreas. heart, eyes, ears and her brain during her childhood. Sadly these won’t improve like her bone marrow.
We are so very fortunate as apart from hardly growing and having adrenal insufficiency she is doing remarkably well, beyond our hopes and dreams. We continue to hope that her disease progression will be slow and kind to her. We are ever grateful that we have met and gotten to know our beautiful little girl who is very loud and funny. She is the best gift and can bring you so much euphoria by just being near you.
All donations are made to the Keswick to Barrow Walk Charity. A percentage of this donation will be used to fund the cost of the walk and support local charities in South Cumbria/North Lancashire. The remainder of the donation will be donated to The Lily Foundation.
Fundraiser Profile
257435
Team Ruby Left (#250)
Raising funds for:
The Lily Foundation
All donations are made to the Keswick to Barrow Walk Charity. A percentage of this donation will be used to fund the cost of the walk and support local charities in South Cumbria/North Lancashire. The remainder of the donation will be donated to the Walker's (Team) nominated charity(ies) as listed above.
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£684.00
raised so far
Donations
- GGrace Duffy2 months 1 week ago£10.00
- SStephen Ryder3 months 1 week ago£10.00
- AAnonymous3 months 2 weeks ago£10.00
- JJustine Willmott3 months 2 weeks ago£10.00
- DDamian Brown3 months 2 weeks ago£10.00
- KKit MacInnes-Manby3 months 2 weeks ago£25.00
- JJanet De Angelis3 months 2 weeks ago£20.00
- LLydia Hutchings3 months 2 weeks ago£10.00
- LLaura Tattersall3 months 2 weeks ago£10.00
- RRobyn Bailey3 months 2 weeks ago£20.00
