Hope House: How to give families moments of magic

As the children's respite hospice launches its Christmas appeal, as ever it is just so critical that it can count up its funding for the days and months and years ahead and know it can carry on with the vital work of supporting life-limited children and their families.

Being able to take in youngsters with so many conditions which often need 24-hour care is just such a relief to parents and carers who simply want the best for these children who are so special to them and who need that special attention, love and friendship.

At Hope House, they find it.

One of those being helped is an eight-year-old called Lyla, who has written an open letter to explain the work of Hope House.

Lyla's sister Poppy is 10 and suffers from up to 20 seizures a day. Her condition was finally diagnosed as Dravet Syndrome and Hope House provides specialist respite care – and much-needed time for Lyla to have quality time with her family.

Hello.

My name is Lyla and my sister's name is Poppy. I'm eight and Poppy is 10.

We're both really excited about Christmas and can't wait to dress up in our new dresses. I love presents, but Poppy isn't bothered about them she just loves ripping and scrunching the wrapping paper.

Poppy had her first seizure when she was a tiny baby and Mummy and Daddy were really scared. She could have as many as 20 seizures a day.

For years Mummy and Daddy didn't know what was going on. Poppy was nearly five before the doctors found out it was Dravet Syndrome. It was then that we went to visit Hope House.

I was only three, but I remember thinking the playroom was amazing and Mummy looked really happy.

Poppy started going to Hope House for overnight stays with Mummy at first, but after a while she started to visit on her own.

I miss Poppy when she stays at Hope House, but it's also good because I get to spend time with Mummy and Daddy. And I get to do things we wouldn't be able to do with Poppy – go to the cinema, go out to eat and have friends over for sleep overs.

Hope House is great because Poppy loves it, Mummy and Daddy get a rest and I do activities with them too. I've been to workshops and on trips to the beach with Sheri and the brothers and sisters of other poorly children at Hope House – it's really fun!

And it's good because they understand what it's like to have a poorly sister.

We do lots of fundraising as a family for Hope House, but I know that without people like you, Hope House wouldn't be here to help children like Poppy and me.

Please give a little love and make a donation to Hope House of whatever you can afford this Christmas.

Thank you very much.

Love, Lyla

Lyla says in her letter: "When she is at Hope House I miss Poppy but it's also good because I get to spend time with Mummy and Daddy and do things we wouldn't be able to do with Poppy."

Of course the specialist care costs. Which is why – along with other charities – at Hope House, the books are kept very carefully and the fundraising and appeals never really stop. They can not afford to ease up on funding.

The service offered, though, is extraordinary and along with the rest of the children's hospice movement, it is unique.

What's more, it also extends to mums and dads, sisters and brothers, grannies and grand-dads, special friends and really, anyone who cares for a child with these life-limiting conditions.

Indeed one of the latest services is help in facing and dealing with a bereavement if and when the worst should happen.

Yet Hope House is a place of warmth and fun, laughter and teasing, and above all else, a constant and patient love from those caring for children and young people who so often have to rely on someone else for everything. The patient love and attention they receive is just quite extraordinary.

It would be unthinkable to see Hope House or Ty Gobaith, its sister hospice at Conwy have money problems which might diminish that special service.

Most of us can't help with the medical day-to-day care of the children. But to make sure it continues, we can help generate the funding to make sure others can.

Actually it is good news that because of progress in research and more effective treatments, many conditions mean that children survive longer than was the case just a few years ago. But the flip side to that coin is the cost of the extra caring up to the age of 25 if necessary.

At the moment, young brothers and sisters like Lyla are especially helped with activities and playgrounds when they visit, someone to talk to whenever they need that, time spent at home and away with other siblings who also have poorly brothers or sisters.

It is a huge relief for parents as well.

And of course if your precious child is in such loving and competent care, it also means other youngsters can get to do things with you which are perhaps not otherwise possible.

Hope House almost always knows what to do.

If you can help this Christmastime, a few facts: £15 gives activities for brothers and sisters, just like Lyla, £30 gives specialist physiotherapy for a poorly child to relax, £60 gives a seriously ill child fun in the hydrotherapy pool, something they can't do anywhere else.

Remember – every penny counts when every moment matters.

If you can help or want to know more, call 01691 671671.

Share your Hope House stories with Shirley

• Are you raising money for Hope House or have a story to tell about the hospice? Shirley Tart would love to hear from you.

• You can email her at shirleyhopehouse@shropshirestar.co.uk and if you have a favourite picture we may be able to use, send us that as well.

• Don’t forget to also add your details like full name, address, phone number and email address.