Meet Harrison! He is a huge fan of Jurassic World and loves to build towering structures with his Legos. Harrison has Duchenne Muscular Dystrophy, a muscle wasting condition which primarily effects boys. However, he still loves a good adventure and strives to live life to the fullest! I conducted an interview with Harrison's parents, and we talked more about Harrison and his diagnosis.
1. To start off, can you tell me a little bit about Harrison (age, more about his condition(s), etc)?
Harrison is 7 years old and he was diagnosed with a severe form of Duchenne Muscular Dystrophy when he was 16 months old. Duchenne Muscular Dystrophy is a rare and fatal form of a muscle wasting condition which primarily effects boys, and there is currently no cure for it.
2. What are some major challenges with having the condition Harrison has?
Harrison's muscles are getting weaker each day. He lost his ability to walk in July 2019, which is now noticeable in his upper limbs as he struggles to write and lift objects. Duchenne affects every muscle in the body including the respiratory muscles, the lungs, and the heart which is our biggest muscle.
3. What is Harrison's day to day life like and how has it been impacted by his diagnosis (for example, therapy, medicine, etc)?
Harrison needs assistance with his personal care and doing activities independently. He attends many medical appointments such as physiotherapy, occupational therapy, a neurologist, a cardiologist, a respiratory team, and more. Harrison still goes to mainstream school with his sister and enjoys playing with Legos, Jurassic World and Youtube.
4. Are there any medical treatments Harrison follows?
There is no medication to cure this condition, but we what we can to maintain a good quality of life. Harrison takes pain medication, heart medication, does stretches, and participates in hydrotherapy.
5. Has Harrison's diagnosis affected the way he learns?
Harrison's condition means that he is impacted in learning due to being absent from school because of attending medical appointments. In class, he finds writing difficult as holding a pencil is challenging so he is beginning to learn 'speech to text' technology on his iPad. He is able to talk to the iPad and dictate what he wants written down. He enjoys being able to do this and being more independent in his school work.
6. What would surprise people the most about Harrison?
Harrison is a very good problem solver. I think this is because he knows he can do just about anything if he puts some thought into it.
7. What does Harrison like to do for fun/hobbies?
Harrison loves to go on rides with his sister to the park, swimming, playing with legos, playing PS4 games, and traveling.
8. What is the most important thing for someone to understand about Harrison's condition?
Sometimes he has good days and has enough energy and sometimes he has not so good days. Also Harrison's condition is progressive so sometimes when you think you've got a hold on it the condition progresses and we need to change what we're doing.
9. Has Harrison's diagnosis affected your job?
I am so busy now managing Harrison's condition, being his caretaker, and going to appointments that I cannot go back to a full-time job. In fact sometimes I think we are approaching a time when I will have to give up work.
10. Are there any resources which you recommend if anyone wants to learn more about Harrison's condition(s)?
There are many resources to learn more about Duchenne Muscular Dystrophy. For example, the Save Our Sons Duchenne Australia and the Parent Project Muscular Dystrophy are both great organizations which encourage awareness and support those with the condition. Also, many countries have their own Duchenne Muscular Dystrophy organization.
11. Has the COVID-19 pandemic affected Harrison's day to day life? If so, how?
Harrison was impacted by COVID-19 by not being able to access some of his appointments, especially hydrotherapy. This prevented his from having a full body work out in the pool which helps him keep his muscles active.
12. If you or Harrison could tell the world one thing, what would it be?
A disability shouldn't prevent you from being part of every aspect of life.