Part 5 - Getting Used To The Changes

A trip to Disney World, Florida

During those early days living with our new diagnosis, I was contacted by `Give Kids the World` a charity for terminally ill children, making their wishes come true. Henry decided that a trip to Disney Land, Florida, was his wish. We flew out with Virgin Atlantic. We stayed at the `Give Kids the World` village run by Mayor and Lady Clinton; two grey rabbits who drove around in a golf buggy, checking on the children and putting them to bed! Every morning the Disney characters came off the Disney Park to have breakfast with the children. It was Christmas every Thursday and the snow would fall; all the ice creams were free. Henry stuck his gold star in the Hall of Miracles. We went to every Disney Park, fast tracked as VIPs. we met every super hero, We went on everything from riding the Hulk and rocking rollercoaster to swimming with dolphins in Discovery Bay. We were even driven to the airport in a chauffeur driven limo! It was such a fantastic trip of a lifetime, with so many incredibly touching memories and we were made to feel so cared for and special!

Henry undergoing Integrative Manual Therapy

My youngest sister is a physio therapist and lives in Hong Kong. At this time, she worked in a private clinic with therapists involved in an alternative therapy called Integrative Manual Therapy (IMT). This treatment is also practiced in Canada, Holland and the USA. It was developed by a woman named Dr Sharon Giammatteo, Ph.D., PT, in the early 1980s. IMT is a unique system of evaluation and treatment that continues to evolve today. Using non-invasive, light touch techniques, IMT allows your body to tap into its incredible self-healing capacity. After reading up on IMT, I arranged to meet my sister in New Mexico, USA, and flew out with Henry for the first of many trips to different clinics in America. Henry met Dr Sharon Giammatteo on one occasion, and she put her hands on Henry. Henry will still remember that remarkable moment. When I took Henry out to America for his first IMT treatment he was unable to walk without holding onto walls, or correcting his posture using his arms, and he had no heel strike. When we walked back through Heathrow Airport to meet my husband, he was walking completely unaided, with a heel strike.

Apart from failing his cycling proficiency Henry managed to keep up with his peers at Primary School. He even managed to go on the Year 6 trip to The Isle of Wight. My husband went along for the week to help support him. It was so important for him to be included, take part, and continue to live life to the full.

Henry and I relaxing in the front garden

We bought Henry his first wheelchair as he moved up to Secondary school. Despite the trips to America and pushing him to keep walking, his mobility was becoming more unstable, and he was having to hold onto things and use his arms to stabilize himself. It was the biggest obvious change in Henry’s life, and he was very reluctant about it. We approached the subject by explaining that it would save his energy levels at school walking around a big campus. The risk of falling was high and safety was priority. I wanted to buy Henry a `nice` wheelchair because I knew that he could easily become a victim of bullying. I approached a local lady who was involved in the Holly & Jessica Fund, set up when donations came flooding in following their tragic murders. Holly and Jessica had both been in Henry’s class at school and the fund agreed to fund Henry’s wheelchair. We went for an electric chair with the engine built by Porsche. It had been designed to go up kerbs, pavements and hills and had a top speed of 12 miles per hour. It was silver with a joystick to steer and lights so it could be driven on the road. It was a sad day when the wheelchair arrived, but I was so grateful to The Holly & Jessica Fund.

Henry could still walk but the wheelchair was helpful. It had taken a lot of persuasion to get Henry on board. It was one of the biggest steps away from normal. Proof that the disease was slowly starting to take away Henry’s mobility and independence. The nice new wheelchair did not stop Henry from getting bullied. I think he was regularly called spastic, retard, and worse. Henry fought back but when you are `different’ you are at a big disadvantage, and the bullies had plenty of ammunition. The school were brilliant. As soon as I told them about one incident, it was immediately dealt with. The bullies had all their breaks taken away for a whole term and were made to clean out dirty cupboards and drawers. Hopefully they learnt their lesson.

Henry with his cousin, Charlie

At frequent intervals, the Occupational Therapist would appear at the school and take Henry out of lessons to assess him. I was never involved. He would come home and tell me that they assessed him doing various physical exercises. It was the same exercises every time. One day he came home and told me that he had definitely done one or two of the exercises better than the last time, but she had still marked him down. He asked whether I thought she had to marked him down because she refused to believe that he could ever improve or progress?

There soon became concern about Henry going up and down school stairs and Henry’s Latin teacher refused to move her classroom downstairs. The Occupational Therapist did a risk assessment. Her findings were that Henry would no longer be able to access any classrooms upstairs, and so would no longer be able to study Latin. The Deputy Head immediately said that was ridiculous. She told me that Henry could access the lesson by going up the stairs on his bottom and coming down the stairs on his bottom, and that he WOULD be attending his Latin lesson! How lucky they had a bit of foresight and imagination. No one was going to tell them how to run `their school`. The Occupational Therapist was never told, and she never found out!