Seven year-old Abbie Denston has a very rare genetic conditions called CACNAI-1-A – she is only the second person in the world to be diagnosed with this condition. Abbie has severe epilepsy, she is tube fed and has respiratory problems which causes a lot of chest infections. She uses a wheelchair and is unable to communicate verbally.
Abbie lives in Cherry Hinton near Cambridge with her mum Lisa, dad Adam, older brother Jake and younger brother Tyler.
Mum Lisa explains: “Abbie was developing fine until she was six months-old – we had no idea there was anything wrong with her. Then one evening she had a seizure and our lives changed forever. It took us several years before Abbie was finally diagnosed with CACNAI-1-A, we were told we may never get a diagnosis.”
Her family have been using services through EACH at Milton since Abbie was one. They use the hospice for a range of things including short break care, counselling and attending groups. Jake also attends sibling days.
“Abbie needs 24-hour care and so the support we get from EACH means so much. It gives us time to spend with the boys to give them attention because a lot of what we do as a family has to revolve around Abbie and her needs. It also gives us a break to relax and take some time for ourselves.
“Over the years we’ve attended lots of groups run by EACH as a family and with Abbie. I’ve found these such a help – they give you chance to speak to people in a similar situation. No one is ever shocked by the things you say as they have been through the same thing. Jake attends sibling day and he loves those too!”
One of Abbie’s favourite things to do at the hospice is to visit the sensory room. EACH has a sensory room at all three of their hospices - these rooms contain a variety of technology using lights, sounds and tactile equipment that can either stimulate or relax the senses depending on the individual.
“Abbie loves the sensory room. She generally doesn’t react to things at all – but the sensory room brings something out in her. The lights make her really focus and you can tell she’s enjoy herself – it’s amazing and lovely to see. I love being in there with her to see what she enjoys and then I can try to replicate that at home. The use of this room has been brilliant – every time she uses I see a change in her.”
Many families who use EACH tell us they were initially put off by the word hospice – Lisa explained how she felt when EACH was suggested to her and her first visit to Milton.
“When I first heard the word hospice I was so shocked – my mouth literally fell open. I said to consultant ‘what are you trying to say?’ It wasn’t until I visited Milton that I could see the difference they make – it’s something I’d never thought about before having Abbie. When I walked into the hospice it really wasn’t what I’d pictured – it was so homely not clinical at all. Everyone was so friendly and welcoming – as soon as you walked in they made you feel like everything was going to be ok. They take care of us all as a family, not just Abbie. The staff make sure we’re all well fed and looked after which is so important and you can often forget about your own needs when you’re caring for your child.”