Kathy Downs

Mother, Supporter

It was Friday, September 23, 2011. My husband Darcy and I had taken the day off from work to get some things done around the house.  It was pleasant day for September; we had finished our day’s chores, and sat down on the front porch around 6:00 for a cold drink when our phone rang. I went into the house to answer the phone. It was a man whose voice I didn’t recognize. He asked if Trevor was there and I replied that Trevor no longer lived at this residence. He identified himself as a doctor at a walk in clinic, and said it was urgent that he reach Trevor. I assured him that I would have Trevor call him as soon as I could. I got hold of Trevor soon after and gave him the doctor’s message. Trevor told me he had been sick for a few days and had some medical tests done that day.  I hung up the phone so he could call the doctor. Trevor called me right back. He said that he needed to get to a hospital as soon as possible because his blood counts were low, and that he wasn’t to drive himself. His girlfriend Meghan lived closer than us so she drove him to the hospital.  We met Trevor and Meghan at the hospital emergency. I was shocked when I first saw him there. His eyes were dilated, he was jaundice. He seemed weak, and Darcy immediately grabbed a wheelchair for him.

Trevor was admitted at once. The tests the doctor had taken earlier that day were available. More blood tests and examinations revealed a platelet count of 8, and a very strange rash on his body. Trevor didn’t seem present at times, and then suddenly he was back with us. Soon, a hematologist was summoned, and he asked Trevor some questions, but right then, Trevor’s answers were making no sense whatsoever. I was panicking. I knew something was horribly wrong.

Trevor’s vitals took a turn for the worse, and he was put in special area for observation. Darcy and I were asked to join the hematologist in a private room for a discussion. That’s when we were told our son had TTP and was in serious danger. They were giving him plasma, blood transfusions and steroids but the treatment he really needed was plasmapherisis. He would have to be moved to the Foothills Medical Center for that. He would go by ambulance as soon as possible. It was explained to us that even with plasmapherisis, he was in great danger of organ failure and possibly death.

Soon after, the ambulance took Trevor to the Foothills Medical Center directly to the ICU. We followed in the car. It was just after midnight when we arrived. The nurse we talked to said he was stable, and that they were preparing him to start plasmapherisis, but we couldn’t see him yet. We waited for what seemed like an eternity. Then we were asked to come into the ICU area. Once inside the waiting area, we saw there was a flurry of activity in a room next to us. Again I had a horrible feeling. Finally a doctor came to see us. He broke the news. Trevor was in cardiac arrest. They were doing CPR to try to resuscitate him. Once again we waited. At times we were allowed inside where Trevor was, and they worked around us. For an hour and a half they tried so very hard to save my son’s life.  But to no avail. He was gone by 3:30 am.

 The three of us were in total shock. I couldn’t believe what had just happened. How could it be? It happened so quickly. I had never heard of TTP before.  In a short time our lives were changed forever. He was so precious. It was impossible to comprehend.

 Trevor was 32 years old, active and seemingly healthy. He was a civil engineer, and was working hard at a career he seemed to enjoy. In the last few months he had travelled to San Diego with Meghan, travelled to Dallas with his brother Jeremy, and had come with us on a family cruise. He had a life. He was kind and gentle, considerate and fun, with lots of friends and family who loved him. He liked to run and ride his bike. He just joined a hockey league. How could he be gone? Just like that? (A year later I am still puzzled)

 We asked lots of questions, but the clues were vague at best. He had gone running with Meghan on Monday night. He told her he wasn’t feeling well and wanted to take it easy, but he still felt like running. I talked to him Tuesday afternoon, but he never even mentioned being sick. He had gone for lunch with one of his buddies from work on Wednesday; he didn’t eat all his lunch which was unusual for him. He said he had been feeling a little sick to his stomach. Darcy talked to him Wednesday morning, he never mentioned being sick.  Because of how fast he deteriorated, the doctor seemed to think the TTP probably came on very quickly in Trevor’s case; likely over the course of a few days. It is thought that he may have had some kind of infection that brought it on. We will never know for sure. The pathology tests revealed nothing. It will always be a puzzle to us. I am certain, though, if Trevor knew how serious it was, he would have gone for medical help much sooner.

This has truly been the most difficult year of our lives, even though many special events occurred to memorialize our son. From the time he was small, he instinctively understood how important relationships were in his life.  That is his true spirit, the guy he was. His spirit lives on. The people he touched in his life have been propelled to remember how he made the world better.  In the town of Strathmore, where he worked to develop a subdivision, the town council voted unanimously to name a street in his honor. In the city of Airdrie where he worked as well, there is a rock with a plaque in a park honoring his memory.  His employer, Urban Systems, set up an Engineering Scholarship in his memory. His legacy goes on.

Trevor was a blood donor from the time he entered post-secondary. There have been countless blood donor clinics in his honor in the last year. I can’t begin to know how many there have been, I just know we keep getting cards from Canadian Blood Services. We have set up a couple honor clinics ourselves, and will continue to do so. It is particularly gratifying when we know that other TTP patients may benefit as well.

We are incredibly proud of Trevor. We are proud that his life is so inspirational. 

Something we could never let pass by us was the fact that Trevor passed away from TTP early in the morning on Sept 24, 2011, and ironically, later that day was the first annual Walk to Answer TTP. The second annual walk seemed like the perfect way to mark one year since his passing. The Walk gave many of us a chance to get through a difficult anniversary in a positive way.

When Darcy and I registered for the Walk we set up team Walking for Trevor. We talked about setting a high goal for ourselves. We even shook our heads a little when we put in a $5000.00 goal saying, well, we won’t do it if we don’t try! We didn’t know how many walkers we would have. I had already talked with many of Trevor’s friends and family so I knew we could count on a few for sure. But on walk day we had 27 registered walkers and 38 if you count the people who decided to walk with us in support without registration. Last I checked we had over $13,000.00 in fundraising. We have been overwhelmed with the support we received. We believe it is Trevor’s inspiration at work.

Our efforts will never bring Trevor back to us, but it feels right to fight back against TTP. Hopefully we will be able to help people suffering the effects of TTP now or in the future. Maybe we can raise awareness. If Trevor knew the symptoms, he might be alive today, who knows? One thing is for sure, more research is needed, because TTP is a nightmare for anyone whose life it touches. It was for us.


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