“We needed help – but we didn’t want to go anywhere near a hospice.”

“When my daughter, Thea, was diagnosed with Niemann Pick Type A just before her first birthday, in April 2017, we were floored.

In just one day we learned that not only could our happy and healthy little girl die before she started school, but everything that so many parents take for granted wouldn’t happen: she would never eat and never talk, and eventually wouldn’t even be able to voluntarily lift her own arm.

We were referred to Forget Me Not children’s hospice soon after the diagnosis, but as far as I was concerned my daughter was not dying now and so wouldn’t be going anywhere near a hospice.

For weeks we felt totally clueless and very alone. We had to come to terms with devastating news, learn how to use various machines and other equipment, and get to grips with a totally new way of parenting. We needed help and so we thought again about Forget Me Not.

The first thing that struck me about their website was that I didn’t see anything about death. I saw lots of disabled children and their families, all happy. The focus seemed to be about supporting families through life. So after discussing it with my husband I arranged a visit. It was hard at first, but I learned so much from Forget Me Not.

Every child at the hospice is different, but what they share is that they are not children who have ‘become ill’. For whatever reason their body does not work as it should and this means an early death. Too early whenever it comes. But they are just children, and whatever it is that their body doesn’t do does not change the fact that they have a life to live, however long or short that might be.

We needed support to live NOW. And Forget Me Not gave us that. They gave us our lives back; the lives of a normal family with two children. Everything we wanted to do as a family we found a way, whether it was driving around the country visiting various friends and family, going to theme parks, to the top of Snowdon, or for long country walks – we would make it work, and we had the confidence to because of Forget Me Not.

This is what children’s hospices are about: supporting you to live the best life that you can with your child. Across the country they provide support to thousands of families. They’re the reason we can carry on, yet they receive little government funding and hundreds of families are missing out on their support. I don’t know how these families manage.

Earlier this month, I ran 10k to raise money for Forget Me Not. I had hoped Thea would be there to cheer me on, but sadly she passed away in February. But I still ran for her, and all the children like her. My life’s mission now is to ensure that every child like Thea and every family like ours have a properly funded hospice to support them. Please spread the word about children’s hospices and how important they are. And please support Forget Me Not: your children’s hospice.”