In December 2013 my little hero, Beni died. He was 18 months old. Born with Myotubular Myopathy, the first 6 months of his life were spent in hospital. With work, travelling to and fro the hospital and being there for our little girl, Bella (only 3 when Beni was born), life became difficult. When Beni finally came home, he required lots of care and return stays in hospital were not uncommon. Quality family time was very, very hard to come by. Getting away even harder; Beni didn't travel well.

Then someone told us about The Bluebells. A holiday house, run by Sebastian's Action Trust, only a few miles from us where we could stay for a week with our own space, where they had a hydro-pool, sensory room, outdoor play area, music room. As soon as Beni was first discharged we booked a stay, and in the following June (Beni now 13 months) we arrived at the house along with Beni's grandparents, uncle, aunt and cousin. For the first time in over a year we had the quality family time we so desperately needed.

In the pool Beni came alive, moving with freedom he so rarely experienced. He would sit in wonder at the lights in the sensory room. But the magic of The Bluebells extends to the whole family. With so many of us there, as well as Beni getting the attention he needed, so did Bella. It also gave Rachel, Beni's mum, and I a little space - and thanks to the well-being treatments available, a little R&R.

After Beni died, the Trust was there for us and remain so. They offered music therapy and a space on a drama workshop to Bella to help her with Beni's death. When Jane, the Trust's CEO, offered me the opportunity to work for them, I jumped at the chance to remember Beni by working to help other families, going through all that we went/are going through (and often more).

I am extremely proud to be representing Sebastian's Action Trust in the year's London Marathon and ask that you show your support for all the Trust does for its families by sponsoring me.

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