Last night (Thursday 9th April) my wife and I were invited to Chestnut Tree House to attend a pasta party.  Chesnut Tree House throw these events to say thank you to their charity runners ahead of the Brighton Marathon.  The party also gives the runners a chance to look around the hospice and be reminded of what they are running for, whilst eating plenty of carbs to fuel their upcoming run.

It is fair to say that I am slightly nervous about running the marathon.  Like all events, I feel under prepared.  Should I have done more training……….. definitely YES.  Is it too late to rectify this situation………..absolutely.  

As we drove into the driveway at Chestnut I was thinking about the other runners I would meet.  How much training have they done?  Will they all be a lot fitter than me (and probably a lot slimmer)?  

Jumping out of the car and grabbing Mia (our 7 week old) my wife and I wandered into the hospice.  We quickly got chatting to the Chestnut staff that were there and also to a few of my fellow runners.  Soon it was time for the pizza and pasta to be served, so we got stuck in to some delicious grub prepared by Chestnut’s resident chef Jez.

A few things struck me whist speaking to the other runners.  Firstly everybody seemed to be at least a bit nervous.  This was very reassuring and it felt good to be in the same boat as the others.  Secondly, the Chestnut staff that we met were so very appreciative of us all running the marathon for the hospice.  The reason why quickly became apparent.

Adult hospice care in the UK is funded by the Government.  If you have a life limiting condition and require a hospice place it is likely that the hospice you go to will receive a very large chunk of funding from the Government.  Children’s hospice care either receive NO Government funding, or in some cases a tiny amount.

I was absolutely stunned to find out this information.  How can this be right?  Why would the Government not fund children’s hospice care?  The answer to this question is unknown, but what is known is that Chestnut Tree House rely on over £3 million of charitable donations to keep open.  They care for 300 children and their families.  Remember that these children all have life limiting conditions.  Some are handicapped, many are oncology patients and they all receive their care from Chestnut absolutely free of charge.  

After our pasta we went on a tour.  To say this was emotional would be an understatement.  We were shown the soft play area, the messy play area (complete with it’s own drain in the middle of the room for clean up) and a great cinema room where the kids can go and watch movies, play Xbox etc.  I was blown away by the swimming pool, which has it’s own projection equipment and a sophisticated hoist that allows children who are too heavy to be carried to be lifted into and out of the pool.  The water is kept at 34 degrees, meaning that children who cannot move normally can enjoy the weightless environment of the pool and jump and walk like their more able bodied friends.  

The tour went on, showing us the music room complete with a piano that lights up and plays itself.  We then moved to a remembrance area, which serves as a multi-faith prayer room and also has 4 large bound books on a table.  These books contain a page for every child that has died whilst being cared for at the hospice.  There are four massive books of children who have passed.  One of those pages will be dedicate to Amber, the little girl who has inspired my whole Ironman journey.  Having two beautiful daughters of my own, I simply could not contemplate what it must be like to have a child die and have a page in this book.  Words just cannot describe what it must be like.

Next to this room was the Stars room.  Steve and Louise (Amber’s parents) had told me about this room, but nothing can quite prepare you for entering it.  The room is a self contained suite with sofa beds, table and chairs, a kitchenette, a bathroom and a bedroom.  The only difference from a normal bedroom is that the bed is a “cold bed”.  This is the room where the children are first laid to rest after they pass away.  Steve told me about how lovely it was to be able to have Amber in this room after she died, so him and Louise could grieve for her and come to terms with her passing.  I was fighting back the tears to think of them in that room having just lost their daughter.  What a simply amazing thing it is that Chestnut can offer this service to children and their families.  

We wandered back into the main room where we started and the tour was concluded.  I was simply in awe of this stunning and amazing place where these life limited children can enjoy their days, some of them their final days, with the care and respect that they deserve.  Chestnut also provide brilliant family care and offer rooms upstairs for families to stay in so they are always close to their children, no matter how ill they become.

We left the hospice and Cat and I had a long chat on the way home about what we had seen and what a privilege it is for me to run for and raise money for such a brilliant charity.

Please remember that Chestnut Tree House is the only hospice covering East and West Sussex and South East Hampshire.  The ONLY one.  It has such a large catchment area and provides such great care that if I had the money I would give them £3 million a year myself.  What an amazing place, with amazing staff.

I hope this blog update has given you a little more insight as to why I am running the marathon and then going on to the Ironman all in aide of Chestnut Tree House.

For those of you who have already donated to my fundraising, a huge thank you from the bottom of my heart for your support.  It means a huge amount to me and even more to the families and children that the hospice care for.

Anybody who would like to donate can find my Just Giving page here https://www.justgiving.com/Iron-Snook/

Please donate what you can; however small as every penny will go to helping this beautiful and amazing hospice continue the great work that it does.

Next blog update will be on Sunday evening after the Marathon.  GULP!

TTFN

Snooky