Who are we?
We are a family affected by FA - a FAmily
Our names are David and Samantha and we live in North Yorkshire. Our FA journey actually began in May 1997 when our daughter Jess was born but in reality, it started in November 2006, when she was admitted to hospital with serious blood problems and diagnosed with FA a few months later. She spent the first 9 years of her life, with lots of problems and hospital admissions / visits but she had been diagnosed with pan-hypopituitarism (FA was missed, even though she had a number of symptoms / signs). Jess went for her Bone Marrow Transplant in May 2008 and initally things went well but then infection set in and she had complications, which resulted in severe GvHD (Graft versus Host Disease). She lost her battle on 1st August 2008, aged just 11. We have a little boy Alex (aged 4), whom also has FA. We also have a daughter Ash (aged 16) and a baby Ethan (aged 4 months) - they do not have FA. As bereaved parents, with a second affected child, we still have to deal with all the issues around having a child with FA. We have experienced a great deal throughout our lives, enabling us to help and support others, by sharing our experiences and "knowledge" (We are not medically trained but over the past two years, we have been to over a dozen FA meetings in the USA, Germany, France, Spain and, of course, the UK, and we have a number of very useful contacts). We would not have chosen to have many of the experiences we have had but there are so many we would not change and are so lucky to have experienced. As a FAmily, we commit a great deal of our own time and resources to the Charity and travelling to meet with other FAmilies and Groups around the world. If you would like to become more involved, please don't hesitate to contact us.
Chairman -
David McDowell
Secretary -
Samantha McDowell
Treasurer -
Elizabeth Welburn
Clinical Trustee / Medical Adviser - TBC
