Practical support

It is official – spending time with Harry Bell can seriously affect your intellect!

Not many 11-year-olds can talk eloquently about the differing features of the top 20 volcanoes, let alone put together a detailed 42-slide PowerPoint presentation on any number of specialist subjects – but then Harry is no ordinary boy.

Harry is the third child of Carolyn and Rob Bell; their eldest son Daniel, aged 13, is severely autistic and their daughter Alice, aged 15, has Asperger’s syndrome – a condition which is also on the autism spectrum and which causes difficulty with social interaction, clumsiness and use of language. It means she has restricted interests and patterns of behaviour.

Harry also has Asperger’s. Consequently, all three children require a high level of order, routine and familiarity in their daily schedule, which has been seriously tested over the last five years following the devastating discovery that Harry also has leukaemia
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Harry was diagnosed with acute lymphoblastic leukaemia (ALL), a cancer of the white blood cells, at the age of five. For three years he endured rounds of chemotherapy, frequent hospital stays and complications associated with this form of blood cancer. At the end of treatment in 2007, Harry was officially “in remission” and the Bell family eased back into the pattern of their old lives. 12 months on they even allowed themselves to relax enough to make a new addition to the family – an adorable, chocolate Labrador puppy named Truffle. Then the unexpected happened – Harry’s leukaemia returned and once again family life became full of uncertainty, disruption and fragmentation.
Harry’s treatment following his relapse has been beset by one complication after another – each requiring lengthy hospital stays and long separations from his dad and siblings. In the last eight months he has fought two cases of shingles, mumps, and pneumonia – any one of which could have been fatal to a youngster who, because of treatment, has a significantly weaker immune system.
The fact that those affected by Asperger’s often appear to have poor social skills presented a challenge for hospital staff treating Harry – particularly when they needed to ask how he was feeling or whether he required pain relief. Carolyn explains: “Most of the nurses just couldn’t ‘get’ Harry; they didn’t understand that he wasn’t being belligerent in not answering direct questions and they very probably misunderstood many of his responses, which can be quite frank. Fortunately, we were able to get some time with Karen Steinhardt (the psychologist at the John Radcliffe Hospital who supports children with cancer – a post initially sponsored by Sebastian’s Action Trust). This really helped as she was able to arrange for notes to be attached to Harry’s file explaining about Asperger’s, and giving staff examples of what does and doesn’t work with children like him. It made a tremendous difference to both Harry and to me.”

Despite the frustrations of long periods away from family and friends, Harry is uncomplaining about his experiences. He says: “It was ok really; I had my dad’s laptop most of the time so I could use Google Earth to research some of my favourite topics, and I like putting together slideshows about some of my interests – such as the solar system or meerkats.”

Harry has just turned 11 and was eagerly anticipating the treat of a trip to London to see the show “Wicked”; a previous trip had been cancelled because he was not well enough and he was devastated when, once again, doctors said his immune system was too low for him to go because of the risk of getting another infection. The Trust is now planning another surprise for Harry and his family to enjoy.

As treatment continues, Harry is thinking about returning to school (something he hasn’t been able to do in some time) and of September when he will start secondary school. Harry is an extremely bright individual; he is particularly good at maths and hopes to become a commercial pilot.
In spite of all he has been through, Harry remains positive. He says: “I think I’m very lucky with my life;

"I have my family and some of the time I have my health, and that’s a lot to be thankful for.”

It doesn’t get more humbling than that!