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They say everyone has a story to tell before attempting to do their first Marathon, and I am certainly no different to that theory. Running isn’t my strength at all as most people will know, but with the help of some friends, family and long distance runners that I know, I have now committed myself to run my first full marathon in Edinburgh on Sunday 27 May 2012. My main motivation for doing this is to help raise some money for a very special charity, the Cgd Society, as I wish to repay some of the debt and gratitude that I owe to some of the most amazing people that I have met in recent years who work at Great Ormond Street hospital, and are funded by this organisation. For it is through their care and dedication to medical research, that they have helped treat my son Daniel (now aged 13), since he was first diagnosed with Cgd (Chronic granulomatous disease) back in 2002. CgD is a rare and life threatening genetic immune deficiency that affects only 8-10 people in a million, as it prevents the white blood cells from working properly to fight off bacterial and fungal infections. Preventative measures must therefore be taken to avoid situations of high risk, together with daily medications to help reduce the risk of infections (more info can be found at: www.cgdsociety.org). Because of this Daniel has had to encounter many limitations to his lifestyle, as his condition also affects the rate of growth and requires constant monitoring and assistance through drugs such as growth hormones. Daniel has also had to miss a lot of schooling from the age of 4 years old to attend regular trips to hospitals, and has undergone many exploratory tests and operations to deal with problems that he has encountered along the way. The most significant of these has included a partial lobectomy in 2006 for a lung infection that continued to grow over many years, and subsequently led to receiving a new trial funded by the Cgd Society, called gene replacement therapy in 2007. This was where he was confined to an isolation ward for 6 weeks, and his own stem cells were used and chemically corrected for a short term period only, in order to help fight off the mass infection that he had at that time. Daniel was the first cgd sufferer in the UK to receive such a ground breaking treatment, despite it only being considered as a short term solution, as further research is required to be considered as a total cure. The only known cure for cgd sufferers is a bone marrow transplant, but a 100% match must be found, and to date there is no match for Daniel. Due to the success of this trial, Daniel’s case is often discussed at immunology conferences all over Europe, the most recent being in Croatia in July 2011. Daniel still faces many challenges that lie ahead, but with the help of all the medical professional teams that are available through the support of the CgD Society, he can now return to school on a part-time basis, although has had to drop down a year to help him catch up with his learning needs.   So together with my brother in law, Jonathan Hutchings (aka Starsky), we aim to raise as much money as we can for the CgD Society in support of the incredible work that they do in liaison with Great Ormond Street, as they really do save lives through their continued dedication to research, and pursuit for a cure for this rare genetic disease. The Cgd Society also offer first rate support services to all families affected by this condition, and provide a dedicated specialist nurse to deal with day to day issues and concerns, and one that we have become totally reliant and dependent upon in our hour of need.   Thank you so much for supporting us if you can, as this really will make a tremendous difference to present and future sufferers just like Daniel.

Edinburgh Marathon 2012 for CgD Society

Edinburgh Marathon 2012 for CgD Society

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