‘All the work Noah’s Ark does has given us a bit of forever…’
Hello, my name is Rose. My life changed hugely when my grandchildren Ben and Sophie came to live with me. Ben, 17, and Sophie, 8, both have an undiagnosed, degenerative neurological condition. They are tube fed because their swallow is impaired, making feeding in the usual way dangerous. They both have uncontrolled epilepsy and curvature of the spine.
Ben is more severely affected than Sophie as he is much further along his journey. Sophie is still able to enjoy going out, so we like to make the most of that when she is well. But things are changing for her.
We are moving towards end of life for Ben now: he has 24hr oxygen requirements and needs substantial medication to keep him comfortable. His medication levels mean that he is asleep for the majority of his day.
As you can imagine, life can be very isolating, both for me and for the children.
Noah’s Ark came into our lives in 2007 and without their practical and emotional support, it’s difficult to see how we would have any life outside of these four walls.
And now, all these years later Noah’s Ark is part of our family. What we get from them 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 precious years and the work Noah’s Ark does has given us a bit of forever.
With thanks to Rose, Ben and Sophie and Noah’s Ark Children’s Hospice for allowing us to reproduce this article here.