‘If I knew then what I know now’

“I feel so lucky to see how happy the children are in Acorns care

My name is Mel and I have the privilege of being an Area fundraiser for Acorns Children’s Hospice and I am also mum to a gorgeous little boy, Matthew.

Today should have been Matthew’s 18th birthday but sadly we said our goodbyes to him nearly 11 years ago.

Matthew had a rare degenerative disease called Batten disease. He was diagnosed aged five. Batten disease is neurodegenerative which means all children with the condition are born perfectly healthy. Matthew reached all his milestones and was attending preschool.

He developed seizures at the age of three and that was where we started our journey to a diagnosis, two years later, of late infantile Batten disease. Gradually over time, he lost the ability to walk, he became very unsteady on his feet and was using a wheelchair. He lost the ability to talk and then had to be fed through a tube in his tummy. Batten disease is like a form of childhood dementia where everything goes into reverse and sadly, Matthew passed away when he was seven years old.

We found a lifeline in Acorns Children’s Hospice.

“If I knew then what I know now, Matthew would have spent more time at Acorns because the love and care children get is so precious.”

Mel, Matthew’s mum

As a parent of a child using Acorns, their nurses were always like the fairies on the top of my Christmas tree. When I joined Acorns as an area fundraiser, I knew that I’d get to see a completely different side of care that I feel really privileged to see.

But it has also made me think – there have been a number of occasions where I have worked from Acorns for the Three Counties, which we used with Matthew, where I would catch moments of a nurse giving a child a hug or reading a book to a child or a child laughing.

I can remember when we would drop Matthew off for daycare. I was always really nervous and anxious and all I did was worry. But if I knew then what I know now, I could have relaxed and made more time for myself without that worry.

I think every parent does worry but if I knew then what I know now, Matthew would have spent more time at Acorns because the love and care children get is so precious.

I’d probably have been a lot more confident to be further away from home and from the hospice. I see some families who go away while Acorns cares for their children, and that was something that never even entered my head. I would never have even allowed myself to. When actually, the child staying at Acorns is probably having the best time out of everybody.

Everything would have been so much less stressful.

Nobody cares for a child like their parents or carers, especially when you’ve got a child who’s very vulnerable and fragile where their health can change quite quickly. To put that trust in someone to care for your child is huge. I know when a parent leaves their child they’re walking away feeling guilty and anxious because that’s how I felt. But I can see now how well their child is being looked after.

The hospice teams do an incredible job. They knew Matthew’s favourite everything and although he lost his eyesight, he knew where he was and he would laugh and relax into it.

I feel so lucky to see how happy the children are in Acorns care. The love that’s given to your child is second to none.

If only a parent could be a fly on the wall of a children’s hospice, you could truly see the love and devotion that’s given to your child. Maybe I can be an ambassador to speak on behalf of their children and reassure parents of the love that’s being given to your child while you’re away.

Hear more from families like Mel’s in our Impact Report