Our son Jack is almost ten years old and his desires are the same as every other kid his age – to feel happy, be healthy and live life to the fullest. Unlike other children, Jack was diagnosed at seven months of age with a mitochondrial disorder. Mitochondrial disease (mito) is a progressive, degenerative condition that robs the body’s cells of energy, causing multiple organ dysfunction or failure. To date there is no known treatment or cure and at the time of Jack’s diagnoses, we were bluntly told that if Jack survived his first year, it was unlikely he would live beyond his third birthday.
We were devastated and there are no words to convey the depth of our emotions.
Together we have struggled with the day-to-day reality that Jack would be unable to sit, stand, walk or talk independently. Unless a cure or treatment is found soon, his disease will progressively and methodically get worse.
Mitochondrial disease has severely limited Jack’s energy levels and Jack’s body has to survive on the equivalent power of a D-size battery. Everyday activities are a struggle with the simplest of tasks requiring significant effort and coordination. Mito affects every system in Jack’s body compromising his immune system and ability to recover from basic illnesses.
Fast forward nine years and we’re in for the fight of our lives as each and every day is extremely challenging for Jack. Despite being very intelligent and socially aware, Jack experiences a myriad of symptoms and suffers with low muscle tone, muscle weakness and pain, and is highly susceptible to fatigue at a cellular level. In recent years, severe epilepsy has dominated his life and Jack can experience upwards of 12 seizures an hour directly impacting his central nervous system, respiratory drive and general well-being.
From the outset we knew no matter what time we had left with Jack, his life was important and we wanted to give him every opportunity to thrive. Our focus is to continue to make a real and tangible difference to Jack’s life, maintain our connection with him whilst enabling him to be connected to his world so he gets to experience life to the fullest.
Since Jack’s diagnosis, he has been involved in a range of therapies and he commenced in the Conductive Education (CE) program at Carson Street School at age three. Conductive Education provides an opportunity for children with complex motor problems to exercise their mind and body in an integrated educational setting to help them build strength, competence and self-confidence. The focus on total communication and the use of Augmentative and Alternative Communication (AAC) means that Jack who has complex communication needs has the opportunity and the language available in his PODD book to enable him to communicate what HE wants to say, when HE wants to say it despite physically not being able to use his voice to speak. Through Conductive Education I learnt how to help Jack to use his body to the best of his capacity. As each new challenge was met, a more difficult task was added. This gave Jack a sense of accomplishment and control that he had never felt before and his confidence grew.
Jack is very intuitive, a wise old soul and sophisticated thinker. He has plenty of time to ponder what he sees and experiences in this world as there is little to distract him from the daily rigours of his illness. The strength of his intelligent mind is none more evident than in his written word.
In the summer of 2013 we had the opportunity to visit Sculptures by the Sea at Cottesloe beach, WA. The spirit of the glass sculpture ‘Transparent Sea’ set against the turquoise blue waters of the Indian Ocean so captivated him that he said he wanted to write a poem about it. We later entered his poem in the Sculptures by the Sea writing competition and Jack won first prize. The message in Jack’s poem is profound. Like the whale shark, Jack is unique.
It took Jack just over an hour to write his poem, all the while, fighting off seizures and fatigue. His poem (in his own words) aptly describes how he yearns to experience the freedom and mobility to move with ease and explore his environment just like the whale shark, as mito has robbed him of the ability to use his legs and he is confined to a wheelchair. On his entry form Jack was asked to comment “What inspired your writing piece and why?” he answered: “I can not speak. I know (what it may be like for the whale shark). I’m wanting you to know.”
I’m not dead,
I feel. I love affection.
Peaceful, I can know.
I can not talk.?I can not go.
Imagine I go to my park, beach, sand.
I, you, float, whale shark.
I need to swim.
The irony is that Jack often feels misunderstood because like the whale shark few know much about his world or what he experiences. Jack is not defined by his disabilities; he is a very capable individual with his own unique strengths and needs.
Despite the challenges we have faced over the years, I’ve never wavered in my belief in Jack or his potential. As our journey has progressed, Jack has taught me so much and I have learned that people with disabilities are unfortunately often more disabled by our society’s misconceptions and assumptions than by their diagnosis or physical body.
As Jack’s mother, carer and advocate, I am in awe of his fighting spirit, his resilience and positive attitude. As Jack gets bigger so does the burden of his care, but those burdens are an easy price to pay for the gift he is to us. In my view he epitomises Albert Einstein’s quote, “Once we accept our limits, we go beyond them”
Charmaine White, August 2014
Read more about The Transparent Sea sculpture and completion.
Sadly, Jack passed away in 2015 after falling quite ill.