Are possible through my Just Giving Page
Nervous Beginnings
Back in 2003 I was in Heidelberg one day at work when David Hartley shared the sad news that his sons had been diagnosed with XLP. I have to say that at the time I had no idea what that was and I am sure many people reading this blog will say the same even now. After a few discussions it was clear that without some fairly major treatment all four of his boys were not likely to survive beyond their teens and that their chances relied on not just excellent medical treatment but also finding bone marrow donors that were a match. (read more about the history here)
At the time of that news I was happily living my own life enjoying the parties that accompany early adulthood and building my career - you could say I was in my own selfish bubble. I would not say I exactly passed by on the other side, as I did keep in close contact with David and provided some things along the way, but while near it still seemed so far away. Since then I have kept in contact with David as his children have one by one undergone their treatment often seeing David in the quieter times between treatments through work.
In August of 2008 I was hit with a piece of news that was personally devastating. My mother had been diagnosed with Cancer and in her case it was going to be terminal. Doctors gave her less than 6 months to live without treatment and 12 months with treatment. Hearing such news is something you can never be prepared for. I was in Hungary at the time and all I wanted to do was go home and give my mum and those close to her a hug. I think I needed a hug myself!
Of course my mother was a fighter and after and she had two rounds of chemotherapy, which took its toll, she decided to focus on quality instead of quantity. I cannot imagine how hard that decision was personally for her or for my father who was alongside her through this terrible time. In the summer of 2009 my mother lost her brave fight and a life was taken way too young. The legacy of that fight lives on though in a changed son. More on that shortly.
Meanwhile David and family continued the long road through treatment and setup the XLP Research Trust Charity. The linked website explains more about the charity aims than I could do justice to here. Through that charity I have watched from afar as various events have been organized including raffles, sponsored walks and triathlons to gather funds. I have marveled at how their Sons have taken part along with others in the family and what looks like an amazing group of participants.
So what has all this got to do with this blog and why I now want to raise money for the XLP Research Trust?
The experience of seeing first-hand the devastating effects for diseases that can affect anyone first hand and watching someone fight so hard, be looked after so well through the wonders of medicine along the way and being looked after by volunteers in the community and in the hospice has changed me as a person forever. Small things make a big difference. I did not realize how much unfortunately until later in life. I am not saying I am now a fund raising crusader or anything like that but I think I understand now the value of how a small part of your time, energy and life can really make an enormous difference on others. It took a big event in my life for me to realize that.
In 2010 I was fortunate enough to find the first place where I could begin to provide my small contribution to the happiness of people in a much more difficult life situation than I have ever been in. That place was the Waldpiraten camp in Heidelberg (English German) which takes children between the age of 9 and 15 with cancer, as well as their brothers and sisters if needed, and provides them with 9 days of fun here in the hills of Heidelberg. The hope is that those 9 days will remain etched in their minds for life. These camps also provide their parents with a much needed break. I have to admit that secretly I believe I enjoy the camps more than the children and I wish I had got involved a lot earlier in my stay in Heidelberg. The camps have taught me that no matter what life throws at you there is always always room for a smile. They have also introduced me to a lot of new activities I would never have previously thought about doing, as we support and look after the children, as well as an amazing group of dedicated volunteers and professionals!
I discovered recently that David and family have taken advantage of a similar program in England called "over the wall". It seems there are many more people helping others than I ever realized and that there is a bigger need for this than I ever imagined!
If I now come back to the XLP Research Trust then the work that trust is doing is something I very strongly support for a variety of reasons:
- It is targeting a disease that targets children who should be in the prime of their life. I see no better cause than to help children overcome such obstacles.
- It is targeting a little known disease that more research is needed into. If I look back at the treatment my own mother was given around cancer that would not have been possible without research over the years. Helping increase awareness and raise money to fund research into something most people do not know much about might lead to breakthroughs that benefit children for years to come.
- Knowing David through work, and a little of what his family has been through, any help I can provide in raising awareness and fundraising will help them to continue their own personal journey on the brighter side of this tough time to raise awareness, improve research and hopefully help others in the same situation they were.
Besides helping the charity the fact I can run the London Marathon means a lot. It is something I had wanted to do for a number of years but was not able to for a variety of reasons. It is something I told my mother I would do one day and dedicate to her. Crossing the finish line will probably be one of the most emotional things I will ever do for that reason and I know that wherever she is right now she will be looking down and telling me that while I am a “silly sod” for putting myself through it she is immensely proud. I am also sure she would approve of that emotion being shared with doing it for a very worthy cause!
This blog is for me to write down thoughts as I train and to share with you my progress (mental, physical and anything else I randomly come up with) and any issues I run into (pardon the pun) while training so that if you choose to sponsor this you can be part of the process!
No amount is too small… your contribution not only helps a great charity but it could profoundly change afflicted young people’s lives in the future! How much more motivation do you need? Go to my Just Giving Page to make your donation.
Mark.
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