Charlie's story

For my son Charlie, every day is a battle to survive.

He's only four, but he's already faced more challenges to his health than most people could expect in a lifetime. I want to tell you a little about him, and about how EACH has brought comfort, relief and joy into Charlie's life.

My little boy was born by emergency caesarean in 2007. He wasn't breathing and had to be resuscitated immediately, and then placed on a ventilator. The doctors and nurses at the hospital were amazing and they saved his life, but Charlie had been starved of oxygen for too long. All of his major organs were badly affected and his brain was severely damaged.

It was six weeks before we were able to bring him home for the first time, but for the whole of the first year of Charlie's life we were constantly having to take him back into hospital. As he grew, we began to realise just how much Charlie had been affected by the complications at birth, and how serious his health problems really were.

He has cerebral palsy, which means he has almost no control over his muscles and movement. He has severe epilepsy, and he fits several times every day, and overnight. He is registered as blind. Charlie is unable to feed himself, so has a tube directly into his tummy. He also needs up to ten different medications every day - which we have to administer.

Charlie is life-threatened and no-one really knows how long he will have – each day has become a big challenge at the start and a little victory at the end.

To be honest, my husband Robin and I thought we could look after Charlie on our own. We're his mum and dad, he's our son and we wanted to be the ones who were there for him, however hard it turned out to be. For the first 18 months of his life we managed – just about. But the constant demands of caring for Charlie were just becoming too much. He would cry all night – 8 or 9 hours at a time. We were lucky to get more than a couple of hours sleep each night and we couldn't carry on.

So, Charlie came to EACH for the first time in June 2009. We'd known about them for a while, but it's so difficult to let your child go, to put that kind of trust in someone else. But the care team at EACH were incredible, they knew exactly what to do and took Charlie's complex care needs in their stride. We saw that they could look after him just as well as us, and we didn't need to worry. It was such a help for us too: the first time Charlie stayed at EACH overnight was the first time in almost two years that we had a full night's sleep.

Now, two years later, Charlie regularly receives care at EACH. We used to go to their old hospice in Walker Close, but we've recently started attending The Treehouse in Ipswich.We go once a week for day care and Charlie stays overnight which gives Robin and I a night off.

And what a place it is! The Treehouse is a new purpose-built children’s hospice and the facilities and gardens there are just amazing. The best thing for Charlie is that they have dedicated physiotherapy. Charlie needs constant support to make sure he's properly positioned and requires daily physiotherapy. We've become experts ourselves at helping Charlie but it's such a relief to know that we can call upon the team at EACH to carry on when we need a break.

Jane, the (wonderful!) physiotherapist at EACH, helps Charlie to use their standing frame. This is a specially designed piece of equipment that supports Charlie's whole body and allows him to be upright and take some of his weight on his feet. She helps Charlie to try out new feelings and sensations by introducing toys that light up or make a noise when he holds them.

His new favourite thing is using the hospice hydrotherapy pool. For each session, Jane goes in the water with Charlie and helps him to move and stretch. The water supports his weight and he can move his limbs much more easily. Even though Charlie can't speak, it's really clear he's enjoying it and it's rapidly become the highlight of our sessions at the hospice.

EACH is an invaluable part of Charlie's life – of all our lives. I couldn't imagine now not being able to go to the hospice, not having the expert professional care that they provide at The Treehouse, and in our own home.

But I know that all of this care and support – which has been so life-changing for Charlie – only exists because local people like you choose to support them. Although we fundraise ourselves for EACH, we know that the money we raise doesn't come close to covering the cost of Charlie's care.

However, Charlie was just one of nearly 1,000 children and young people, including siblings, that EACH cared for last year. Some come to their amazing hospices in Ipswich, Quidenham and Milton. Others rely on the exceptional home care that EACH provides across Cambs, Norfolk, Suffolk and North Essex. I want to do everything I can to make sure all life-threatened children who turn to EACH for help have the same chance for the same support. This is why I want to ask you today to make a donation that will pay for just a little bit of that care.

I asked Jane and she told me that providing physiotherapy for an hour for a child like Charlie using their standing frame costs EACH £22. A donation from you today could buy an hour of life-changing care for another child.

Every session that Charlie has in the hydrotherapy pool costs £47. It's the thing we look forward to the most and your donation could give another child the same chance to experience the warmth, relaxation and therapeutic benefits the pool provides.

I want you to know that whatever you choose to give to EACH will make a real, immediate difference to a local life-threatened child and their family. I know how incredibly hard it is for parents like us to cope and how much children like Charlie benefit from EACH's care and support. Thank you for reading this and thank you for anything you can do to help EACH and the children they care for.

With all best wishes from me, Robin and (of course!) Charlie.