This March I am running (probably crawling) the Llanelli Half Marathon to raise money for a wonderful charity, Noahs Ark Childrens Hospice. In loving memory of Ben, for the ongoing support with Sophie and with love to Auntie Rose. 
Below is details of the Make A Memory  campaign dedicated to Ben, Sophie and Auntie Rose. 

"All the work Noah's Ark has done has given us a bit of forever"

Hello, my name is Rose. Firstly, I would like to say a big thank you for giving Noah's Ark Children's Hospice your support. Without it, the lives of many families living close to you would be very different. Our lives certainly would be.

My life changed hugely when my grandchildren Ben and Sophie came to live with me. Ben has an undiagnosed progressive condition which means he has profound physical and learning disabilities. He is completely reliant on me to keep him safe. Sophie, a few years younger, is displaying similar symptoms and, most likely, her condition will deteriorate in the same way over time.

Our days start at about 5.30am. Sophie gets up first and I get her dressed and give her medication before Ben needs me. Ben is a teenager now and far too heavy for me to lift so I use the hoist to get him out of bed and to the bathroom. I start his feeding drip, administer his medication, bath and dress him and make sure his nebuliser and suction machine are clean - he can't breathe without these things. Getting us all ready is a mission.

As you can imagine, one of the biggest challenges is that life can be very isolating, both for me and for the children. Our life is very restricted so there is little spontaneity. Noah's Ark came into our lives in November 2007 and without this practical support, it's difficult to see how we would have any life outside of these four walls.

We were introduced to Noah's Ark's Play Specialist, Katie - 'Katie Play,' as we call her. When she turns up at the door, she always brings games, activities and new ideas to enable Ben and Sophie to play together. It's like letting a breath of fresh air into our home.

All these years on, Noah's Ark is now part of our family. It would be easy to think 'we won't bother doing this or going there,' but Noah's Ark finds out what you need and gets you there, whether it is going along to a Family Day, or arranging the support of a Carer or Family Support Volunteer. There is nothing too difficult or too trivial. Someone from Noah's Ark - an 'ironing angel' - even comes and takes away a bag of ironing every so often and brings it back to me. Her help is invaluable - it gives me a little more time to be with Ben and Sophie.

I've been bowled over by some of the fantastic people I've met through Noah's Ark. I don't think they realise what an impact they have on us. What we get from Noah's Ark isn't just nice to have, it is vital.

I'm under no illusion that there will come a time when Ben and Sophie won't be here anymore. They are such precious kids, and the precious years and the work Noah's Ark does has given us a bit of forever.

Noah's Ark is giving me the chance to create precious moments with Ben and Sophie: precious moments which I know will become everlasting memories. Please make this happen for other families."

Our Make A Memory campaign is dedicated to and in loving memory of Ben who died on 1st December 2014.

http://www.noahsarkhospice.org.uk/make-a-memory/rose,-ben-and-sophie.aspx

Any support or donations would be hugely appreciated.