In the summer of 2014, our lives got turned upside down. Our 14 year old son, Harrison, was showing strange signs of awkwardness, slurred speech and drooling. He had just “shot up” a few inches in height and it seemed that with this growth he had become an “awkward teen”. While these changes seemed a little excessive he was truly getting tall and gangly. His slurred speech and drooling we thought must be from his new braces. And yet, to us, it was a little unsettling…something didn’t seem right. Were we overly concerned? Were we seeing more than what was there?
Every day we seemed to say: “Harrison sit up straight!”, “Close your mouth and stop drooling!”, we continually hounded him. We felt that he wasn’t making an effort and we felt bad about it. He was also not himself. He was lethargic on stage when he performed his music and he just wasn’t very responsive when playing hockey. At one point he was diagnosed as having ADD.
Then one day we noticed a tremor in his arm and this, we could not attribute to puberty, growth spurts or anything normal. When the pediatrician checked him out, she could find nothing. “He seems normal,” she said, “but that tremor is strange”. As a precaution, she sent us to a pediatric specialist who did her own tests but said the same thing: “He seems normal but that tremor is strange.” And so she ordered an in-depth blood test, thinking that nothing would result.
When the blood was tested, they called us and had us bring him immediately to Toronto Sick Kids Hospital emergency care where we were told a Neurologist would be waiting for us. There, they wanted to perform an MRI scan of his brain, thinking that there may be a tumor. They also called in an Oncologist preparing us for a spinal tap to be done. Harrison felt like he was “in a dream” but for us it was a nightmare. The MRI did not appear to show anything until the Radiologist took a second look and noticed that a part of Harrison’s brain showed atrophy. The Radiologist and Doctors collaborated and swiftly confirmed the diagnosis: Harrison had Wilson’s Disease. This was seemingly better than a brain tumor or cancer we thought, but we had never heard of Wilson’s Disease, and how bad could it be? This was to start our new journey as a family…to understand, to learn and to cope with Wilson’s.
It continues to be a journey of discovery but we are learning not just about the disease but also about the challenges: the challenges of access to costly medications, of navigating the health care system, of misdiagnosis, of treatment and of the need to have support. Support of not only one another, but as a family and as a community. Wilson’s is not going away and remains misunderstood. And there is uncertainty about how much Harrison will “bounce back”. But with medicine and therapy, we see that his condition has already improved somewhat and he has become diligent in his effort to ensure that he eats foods low in copper.
We would love to see a strong Canadian chapter of the WDA, an organization that has provided us with invaluable support and is our only true advocate.