Stefan Fields

For Rosa Genevieve - Yorkshire Three Peaks Walk on Friday 20th March 2020

Fundraising for Barth Syndrome UK
£1,035
raised of £1,000 target
Donations cannot currently be made to this page
In memory of Rosa Genevieve Fields
Barth Syndrome UK

Verified by JustGiving

RCN 1181830
We support families & fund research to improve the lives of affected people

Story

Thanks for taking the time to visit my JustGiving page.

I will be doing The Yorkshire 3 peaks walk to raise funds for Barth Syndrome UK in conjunction with Henrys Hope, another charity set up for bereaved parents.

https://www.facebook.com/HenrysHopePage

We lost Rosa to Barth Syndrome on 12th August 2017. She was 3 years and 2 months old. No words can express how things have changed since then and how we miss one of the most precious things that has come into our lives. 

Rosa was a triplet born on 26th June 2014 along with her identical sister Emmylou and brother Reuben.

She was a funny, clever, beautiful little girl who would melt anyones heart. She loved life and being with her brother and sister. The bond that they had was an amazing and very special thing to see.

She was diagnosed with Barth Syndrome in October 2016 after not sleeping for the best part of 18 months and showing signs of being unwell and general weakness. It was a long and rocky road but after diagnosis and being put on medication she was never better.

Barth Syndrome is a complex and life threatening genetic condition that affects the heart, immune system and growth. Children and adults both Girls and Boys struggle with extreme fatigue, sudden heart arrhythmias, muscle weakness and recurring infections due to low numbers of white blood cells called neutropenia.

Louise her mum and my world totally fell apart on the afternoon of 12th August. It came as a massive shock because she had been doing so well but that is the nature of Barth Syndrome.

I promised myself that I would keep this short. In a nutshell Barth Syndrome UK desperately need funds and as much help as they can get for research and to find a cure for this very rare condition. I believe there is approximately 200 people both female and male worldwide that have it.

The Yorkshire 3 Peak Walk is 24 miles. I will be limping round on Friday 20th March to raise funds for a great cause. I'll be doing it with other dads, part of (Henrys Hope) who have also lost children so I'm guessing it will be emotional.

Thanks again for reading a snippet of our story.

Hope you can give a little bit, as every little bit counts.

Stefan



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About the charity

Barth Syndrome UK

Verified by JustGiving

RCN 1181830
Barth syndrome is a complex and life threatening genetic condition that affects the heart, immune system and growth. Our children and adults struggle with extreme fatigue, sudden heart arrhythmias and recurring infections. Help us to fund research and to find a cure for this devastating condition.

Donation summary

Total raised
£1,035.00
+ £171.69 Gift Aid
Online donations
£1,035.00
Offline donations
£0.00

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