Michael's story

Michael* from Coventry is four years old. He has a medical condition called Late Infantile Battens Disease. Typical of the illness, Michael was born without any symptoms. Then, at around 3 months he had a seizure. His seizures then continued and his first years of life were spent trying to find the right drugs plan to control them.

At around two-and-half years of age, more tests were carried out because Michael’s seizures were increasing, his speech was also starting to become impaired. A positive diagnosis for Late Infantile Battens Disease was given in October 2008.

Since then Michael has completely lost his ability to walk and talk, and is also now losing his sight. He has to have a drugs plan administered both morning and night, and he cannot be left alone. Michael now requires round-the-clock care.

Michael’s family were told about Acorns Children's Hospice shortly after Michael’s diagnosis. At first, mum Karen was not that keen on the idea. Like some families when they are first told about a children’s hospice they can form an inaccurate perception about what a children’s hospice actually is, often relating to what they may already know about the adult hospice movement, Karen confessed to “absolutely dreading” their first visit.

On arrival at Acorns, Karen and her family were greeted by something they hadn’t expected, “it was like a special hotel for children!” said Karen. Children’s hospices are cosy home-from-home environments where children can stay for short breaks and sleep in private bedrooms decorated with their own things. At Acorns there are hydrotherapy pools so that the children can relax in warm, safe water, and there’s a host of other complimentary therapies and services. When children like Michael stay for a short break it gives families like Karen’s the chance to have a break too, knowing their child is in safe hands.

Michael first stayed at Acorns in August last year. Karen said: “The nurses were brilliant, they really understood Michael’s care needs. I can safely leave Michael in their hands. I miss him when he’s at Acorns and do not stop thinking about him but I know that he’s safe and that he’s in a place where he enjoys himself.

“When we heard that Acorns was struggling in the current economic climate we got so angry that this fantastic service should be battling so hard to get the funds it needs to help families like ours.”

Karen discusses how she copes with the knowledge that Michael’s condition is life limiting, meaning that there is no cure and her son is unlikely to reach adulthood.

“I don’t look at Michael any differently to my other three children. When Michael was born I fell in love with a normal child, there’s just been some changes along the way.”

At Acorns Michael enjoys spending time in the multi-sensory room, which offers fibre-optic lights, heated water beds, and lots of sounds and shapes. This form of therapy helps Michael to relax and unwind. Sadly, Acorns is the only place where Michael can access this service, as multi-sensory therapy is very expensive to have at home.

Acorns offers a wide range of services for children, and also families too, helping to support the family unit at every step of the way. “Just to know that someone is walking with us down this sometimes very challenging road is very de-stressing. And we know that when the time comes to say goodbye Acorns will be there to offer a private sanctuary. Acorns helps us to be as normal a family as possible, just knowing they’re there gives us comfort, and when we need Acorns for whatever reason it becomes a lifeline.” Karen.

*Names have been changed to protect the identities of the family.