I’m doing this walk for my friends wonderful little girl, Ruby. 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. Nikki & John, Ruby’s parents have said ‘they feel 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’.
Please please donate as much as you can do help me run, walk, crawl the distance & raise money for the Lily foundation to help families with rare conditions such as Ruby’s.
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’.
Please please donate as much as you can do help me run, walk, crawl the distance & raise money for the Lily foundation to help families with rare conditions such as Ruby’s.
Fundraiser Profile
256484
SB
Sarah Beeby
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 Sarah
Please share this page with your friends and family to help Sarah raise more for their chosen charities.
£618.00
raised so far
Donations
- MMargaret Robinson2 months 4 weeks ago£15.00
- LLindsay Smith3 months ago£10.00
- SSarah Jacques3 months ago£20.00
- RRuth Quail3 months ago£20.00
- DDebra Allison3 months ago£50.00
- AAmie Brown3 months ago£10.00
- DDavid Bladen3 months ago£10.00
- EEmma Wignall3 months ago£10.00
- KKirsty Redgraves3 months ago£25.00
- LLauren Bisset3 months ago£10.00
