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.
Stefan has his own JustGiving page set up to raise funds to Barth Syndrome, if you'd like to donate to his page please follow the above link