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 work to end the suffering caused by rare mitochondrial diseases through support, research and education. This charity is a huge support for children like Ruby, 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’s syndrome; a mass deletion of mtDNA. Her mitochondria, her batteries that power the cells are missing a large chunk of mtDNA. Thanks to blood donors she was able to thrive and by the time she was 3 she stopped needing the transfusions. Pearson’s 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.
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’s syndrome; a mass deletion of mtDNA. Her mitochondria, her batteries that power the cells are missing a large chunk of mtDNA. Thanks to blood donors she was able to thrive and by the time she was 3 she stopped needing the transfusions. Pearson’s 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.
Fundraiser Profile
257342
RG
Rachel Galley
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.
Help Rachel
Please share this page with your friends and family to help Rachel raise more for their chosen charities.
£420.00
raised so far
Donations
- MMatt Galley3 months ago£20.00
- CCarys Owen-Wilding3 months 1 week ago£20.00
- RRebecca Walsh3 months 1 week ago£10.00
- DDebbie Clark3 months 1 week ago£10.00
- KKirsty Akrigg3 months 1 week ago£10.00
- PPhil Rowland3 months 1 week ago£50.00
- CChris Rowland3 months 1 week ago£50.00
- MMrs Wakefield3 months 1 week ago£10.00
- KKarolina Warszton3 months 1 week ago£10.00
- SSarah Greenwood3 months 1 week ago£10.00
