Jack and Ben's Story
Jack and Ben – and their family
Jack with Bridget Turner, CHASE Deputy DEO and Director of Care
It’s a pretty normal scene in the Jack and Ben’s household during school holidays.
It’s 10am and Jack (12) is busy playing on his new hand held computer. His younger brother Ben (8) is glued to a DVD he has already watched several times.
Sian, their sister (14) is upstairs, taking advantage of the extra time she has to get ready this morning, because it’s school holidays.
Their mother Stephanie is in the kitchen, sorting out some domestic chores and father Martin has long left for work.
The scene is normal - apart from the fact that Jack is in a wheelchair because he has Duchene Muscular Dystrophy. Sadly, little Ben is stricken with the same disease and although for him at present, life does not mean disability, he is getting a little clumsy and frustrated on occasions, when he finds he is unable to do some of the physical things he used to find easy.
The boys are not fully aware of the implications for their future and although as Stephanie explains, they do talk about it as a family, the boys have not asked too many far reaching questions yet.
The family, who live on the outskirts of Horsham, is supported by CHASE hospice care for children. One of the CHASE community team members, Rachel regularly visits them at home either playing with them there or maybe taking them out somewhere to give Stephanie a break.
Jack and Ben’s family became involved with CHASE two years ago after their community nurse suggested CHASE as a means of respite but Stephanie and Martin initially found the word “hospice” a difficult one to cope with.
Having visited Christopher’s and met Rachel, it was a different story.
“Rachel is just like one of the family,” Stephanie says.
The boys also spend time at Christopher’s – the CHASE children’s hospice near Guildford and really enjoy the activities there. Jack has made friends with other boys and it gives him the independence that he craves. “He is nearly a teenager after all,” Stephanie says. Stephanie says sometimes she feels a bit selfish when the boys go off to Christopher’s but says she has come to recognise that you need to take time out for yourself and it is also important for her to spend mother-daughter time with Sian.
They take the whole family along to Family Fun Day – an event held at Christopher’s each September. There are always lots of activities in the grounds at Christopher’s and a theme – this year it is Jungle – so Stephanie will soon be making various costumes for her family to wear.
Sian thoroughly enjoys the siblings activity days organised by CHASE and this year she will be going on a long weekend yachting trip with Ocean Youth Trust South on the training ship John Laing. CHASE operates a partnership with Ocean Youth Trust South which offers sea-going breaks for young people.
Other members of the family are also supported by CHASE and are equally important. Stephanie’s parents, Sheila and Brian go along to “grandparent’s days” which give them an opportunity to chat to other grandparents and help them come to terms with what is in the future for their grandsons.
When it comes to talking about what the future holds CHASE will be there to support them all. They know times will get more difficult as Jack and Ben’s condition develops but CHASE will offer the support they need throughout their journey with the boys - and beyond.
Jack is losing more of his physical abilities now but Stephanie says it is difficult to tell if Ben has figured out that the same thing is in store for him.
When Jack was a toddler he always walked awkwardly and they knew something was wrong but were initially told he had club feet and later after tests it was suggested he might have cerebral palsy. “The doctors didn’t warn us early enough. We hadn’t seen their notes which would have alerted us. There was enough in their notes to have warned us not to go ahead and have another child. But Ben was nine months old when we found out what was really wrong with Jack.”
Ben seemed so different to Jack and Stephanie said they were initially convinced he didn’t have Duchene Muscular Dystrophy. But the tests proved otherwise and now he is eight years old, some of the signs are beginning to show.
Jack had also been eight when his condition began to get worse.
Jack started out at Greenways Junior School and is now in mainstream School at Angmering which also has a special centre, the Lavinia Norfolk centre which has fantastic facilities for youngsters with disabilities.
Able bodied youngsters complete a special course which enables them to buddy-up with disabled youngsters on activity holidays and currently Jack is really looking forward to a trip to the Isle of Wight.
Jack was thrilled recently to win a Gold medal in Boccia – a target game, when Angmering School took part in the Stoke Mandeville Wheelchair Games.
As for Ben, he now attends Greenway Junior School and is a rather stubborn lad who does not find it easy to conform. Stephanie and Martin know they might be in for a rough ride with him when the disease develops.
They are grateful to have the help and support that CHASE offers and they know they will need more of that support as time goes by.