Thanks for taking the time to visit our JustGiving page.

To be honest we've never really raised much money for charity before.  We've both always been pretty discriminatory when chosing who to give to, we've had the ocassional direct debit set up for 5 pounds a month, but never gone for raising a lump sum like now. We had no direct need to do it and life was taking us in all sorts of other directions.

Our reason for doing this here and now, is almost 2 yrs old and he's the most beautiful, enriching addition to our lives there could ever have been. Torin, our son, was born on 27th Feb 2011. At 5 months he was admitted to hospital with suspected severe aneamia. The following 5 months, now a blur, was a constant stream of travelling, hospital appointments, blood transfusions and other medical procedures. Finally in October 2011 we were given a diagnosis. It was called Pearson Syndrome, we had no idea what this meant and so we asked. The answer that came was unexpected and changed our lives beyond recognition from that day on. We were told that pearson syndrome is a mitochondrial disease, affecting the bone marrow and pancreas primarily and that this disease is also "multi-systemic" meaning that it can arise at any time in any other tissue in the body. Basically it's progressive. Finally we were told that if Torin made it to primary school, then it is unlikely he'd make it to secondary school.

It has taken us a little over a year to find our feet again after hearing that news, both individually and as a family. Right now we are scared, but standing, we are strong, but open, to whatever is to come. We see it as our sole responsibilty to Torin to not allow what we have been told to close us down to life, but to learn to let it open us outwards, so that he can be given the best possible experience of life, and all it has to offer. Mostly, he shows us the way down this new path.

Doing the "fundraising" thing could be seen as cliche for the cynical and judgemental and I'll freely admit to being one of those people. However, it's not until you find yourself in a situation such as ours that you really and genuinely want to do something to somehow make it better, all round. Not only for those who are suffering directly and indirectly, but also for those who feel helpless on the periphery of families who are in the thick of it. These types of events are an opportunity for peole to feel that they have helped in the best way they can.

So if you know us or even if you don't and you are moved to help us help other families who find themselves in a similar cirumstances, then please donate to the Lily Foundation through this page.

With much love and gratitude

Duncan, Sian and Torin

 

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.

So please dig deep and donate now.