Alexander Devine Children’s Hospice Service was founded in 2007, with the aim of providing a dedicated hospice service for all children with a life-limiting or life-threatening condition in Berkshire and beyond. The charity already provides a comprehensive community service, and is now working to build a hospice so that local families have flexibility and choice.
A ray of sunshine picks out a special moment between a loving dad and his little boy, sharing a seat on a woodland swing, seemingly without a care in the world, aware of only each other’s closeness, the warmth of the sunlight and the dappled shade of the trees.
It would be a treasured photo in any family’s album but for Steven it is extra precious, for him and his little boy, Cameron, moments like this are few and far between. A gentle swing is one of the few things father and son can do together, because bright, bubbly, cheeky Cameron was born with SMA Type II.
Cameron is a very special little boy. He is noisy, cheeky and loves to play with gadgets – a bright and happy chap who adores his big sister and toddler brother. In many ways a normal four year old, but that is where the similarities end, because Cameron cannot run around kicking a football, dash from ride to ride in a theme park or pop round to a friend’s house for a play date.
Cameron’s legs are in splints, his muscles are weak and on a bad day he struggles to lift his head. He needs 9 to 10 medications a day and spends much of his time in his wheelchair. Two years ago he was diagnosed with Spinal Muscular Atrophy (SMA) Type II, a progressive muscle wasting disease.
Mum and Dad, Charlotte and Steven, say Cameron is prone to picking up bugs and viruses. For Cameron, a chest infection can quickly turn to pneumonia or extreme breathing problems because his muscles are so weak even clearing his throat or coughing can be a struggle, and his lung function is poor.
Charlotte says: “We try not to think about how long he will be with us, some people with SMA Type II live until they are young adults. If we can keep him healthy he will go on as long as possible, it’s whenever his lungs decide to give up. But we don’t get dreary, we just try to make sure Cameron is happy every single day. Cameron hates hospital so much, I am determined he won’t end up there too often.”
The Alexander’s Care Team currently cares for Cameron and supports his family in their own home. Charlotte admits: “It took me a long time to accept help. The word ‘hospice’ scared me but everyone told me we needed help.
“Cameron absolutely adores his Alexander’s Carer, she is so lovely, thoughtful and caring. I know he’s safe with her and I trust her. It means I can spend time with Chloe and Oscar too.
“It would be so nice to be able to drop Cameron off at a local children’s hospice for a few hours at first, to build up to him staying longer so we could take Chloe and Oscar out for a day and give them some time, it’s just a shame it isn’t built yet.”
A local children’s hospice would support the whole family – giving Cameron a homely, comfortable alternative to hospital; allowing Charlotte to get a full night’s sleep in the confidence that an expert is listening out for any change in Cameron’s breathing or even just a cough; giving sister Chloe, six, and 18-month old Oscar the chance to have mum and dad’s full.
He says: “When Cameron was born I dreamed of us kicking a ball around together but we adapt to what he can do, rather than what he can’t. I know what to expect from his condition but I don’t really want to think about it. I know it’s going to get more challenging and harder to do things.
“I take both the boys to a dads’ group at our local children’s centre once a month. I do get support there, but Cameron is the only disabled child and I find myself repeating everything [about his condition] to different people, but if there was a children’s hospice I could meet dads in a similar situation, I wouldn’t have to explain, it would be a lot more relaxing and there would be specialists there to help. It would make a big difference to meet other dads and make friends; we haven’t got many friends now, as soon as Cameron was diagnosed they drifted away, they feel we’ve got enough on our plate, they know we don’t have time to socialise and we can’t share family days out because there are so few places that Cameron can go to, that are really suitable for disabled children.”
Relaxed outings when Cameron can join in all the fun are almost impossible but thanks to Alexander Devine Children’s Hospice Service the family spent a magical summer’s day in West Berkshire with other families in a similar situation. Play, music, a woodland trail and tame animals were on offer thanks to the Alexander’s Care Team – an occasion that, with your help, would be a regular feature within the six acres of grounds of our purpose-built children’s hospice where Cameron’s needs could be met by specialist staff who understand the importance of living in moments.
Steven says: “It was a wonderful day for Cameron and for us. We spent a special day as a family, that meant a lot. Without the money to fund the Alexander’s Care Team and the hospice service, none of that would be possible.”
Since 2011, DM Thomas Foundation has awarded £4,057 to the Alexander Devine Children’s Hospice Service.