Donor Stories – Tim Hockey
Often when donors give to SickKids, they do so because they have a personal connection with the Hospital - their child or a child they know has been treated here. Not so for Tim Hockey. "It's actually the absence of a personal connection with SickKids that has inspired me to get involved," he explains.
In December of 1998, Tim Hockey and his wife Lana welcomed the arrival of their daughter at a hospital in London, Ontario. From the moment she was born their excitement was tempered by signs that all was not well. Some of the physical characteristics of her hands and feet suggested she had Down Syndrome, which, in combination with other signs, led doctors to give her the diagnosis.
Hearing the news put Tim and his wife into what he describes as a state of mourning. But after a week they came to the realization that in spite of her diagnosis, their daughter would likely be happy and healthy. Ready to move on and eager to take their daughter home, they were surprised to hear from doctors that test results showed she did not have Down Syndrome after all. What should have been good news quickly turned into a desperate six-month-long search to find the real diagnosis - a search that would take them all the way to Johns Hopkins Hospital in Baltimore, Maryland.
"No one in Canada could diagnose her," explains Hockey. "We had to go down to Johns Hopkins to find the one guy who was doing research into what she was ultimately diagnosed as having, an extremely rare genetic condition known as Neonataladrenoleukodystrophy."
“What my family and I went through was a life-changing experience.”
Finally getting the diagnosis after months of uncertainty taught Hockey something seemingly contradictory about the human condition. "It was the worst news you could get - that your daughter was suffering from a fatal genetic disorder - but somehow it was a relief. Finding out even the worst news felt emotionally better than the pain of relentlessly searching for answers."
A few days after her second birthday, the Hockey's daughter passed away. For a number of years, it was too difficult for Hockey to get involved with anything related to children's health, but he set a goal for five years down the road to start devoting more time, energy, and money to the cause. He wanted to do what he could to make sure other Canadian families would not have to leave their own country to find the care their child needed.
When he was ready, Hockey joined SickKids Foundation's Board of Directors and recently, when the opportunity arose to become Chair of the Research & Learning Tower Campaign, Hockey stepped up, explaining the decision was easy to make. "What my family and I went through was a life-changing experience. Because there was no cure for my daughter's disease, the researcher we met at Johns Hopkins ended up being more of a counselor. He knew the only benefit he could give to families was to make the children as comfortable as possible and help the parents understand what they would be going through. Working with him showed me how inextricably linked research and clinical care are. The new Tower will allow us to shorten the distance between the bench and the bedside and bring people like him to SickKids so we can ease the burden these kinds of diseases put on families."
Looking forward to the work that lies ahead Hockey explains, "the team that has assembled to lead the Campaign is extraordinary - a very talented and passionate group of people, who are motivated to get this Tower built. I think, like me, they want to be able to look back on their lives and know that they made a real difference to the state of health care for children in Canada."
