Four-year-old Charlie has so far not been diagnosed with a condition. He has lung disease, can’t swallow safely and has a gastrostomy and uses an oxygen machine to help him breath, but no cause has been found for his medical conditions.
When Charlie was first referred to Little Havens the family were initially refused, as Charlie was undiagnosed it was difficult to show what his specific needs were. However, after Charlie deteriorated the family – including big brother Alfie, eight - turned to Little Havens again in November 2015 and were invited in for a stay.
“The only thing I was worried about before we came to Little Havens was explaining it to Alf, because he’s so sensitive. I didn’t want to worry or upset him or for him to think Charlie wouldn’t be around for very long. They can be quite boisterous and loud too and I was worried it might not be appropriate, that it wouldn’t be ok for them to be loud and run around. I don’t know what I imagined but I don’t think I imagined it to be as relaxed as it is. As soon as we got here we felt at home straight away,” says Charlie’s mum Emma.
Charlie and Alf are very close and during Charlie’s often long stays in hospital the brothers talk over Facetime and Charlie shows Alf his room.
“They’re very different but I think they complement each other and they miss each other a lot when Charlie’s in hospital.
“When our Palliative Care Nurse mentioned Little Havens I panicked because I thought it meant she didn’t think Charlie was going to live very long. We weren’t getting any support, he didn’t have a continual care package and I needed to do something. I needed a rest and to just feel like someone was there to support us.
“There are so many times when the family is separated. When we stay at Little Havens we stay as a family, it’s so nice to get a proper break and the kids love it here.
“I always assumed that if you had a child with a disability someone would tell you what you’re meant to say but they don’t so we’re kind of winging it. Charlie has started to ask a few awkward questions. He asked me if he takes his cannula off is he going to die? I think as children get older they become more aware of their own mortality.
“Coming to Little Havens has been amazing. The kids love it and what’s so nice is that the kids think it’s a holiday and I love that. Alf has just started going to a support group for siblings and Charlie loves the ball pool. Russ and I are able to actually get some sleep as well and properly relax. We can ask for advice too; we get so many letters and often we don’t fully understand what they mean and some of the medical terminology so the Care Team can explain.
“During our stays so far Charlie has been well and able to enjoy it and I’m really grateful for that because he knows the hospice now and he’ll be really comfortable here when he’s not well. He feels confident and has been able to enjoy it.
“The bit I find hard is not knowing. Do I plan for years and years? Is he going to become an adult? But then when he’s so well none of it feels real because he doesn’t look sick, he’s happy and chatty. Then it comes as a bit of a shock when he goes downhill, particularly when you start to see his body start to give up, you realise that he is actually quite sick and you’ve got to remember that.”
If your child has been diagnosed with a life-limiting illness, Little Havens Hospices can help. Find out more about the care and support we provide here.