History of the Heart Defects Society

The Heart Defects Society was the brainstorm of three adults with heart defects, Francine Bryar, Melissa Trothen and Claudette Dugas. Francine approached the City Council in Windsor to create a day for heart defect awareness, and as a result, was interviewed by CBC television. This interview resulted in the 3 women being introduced.

All three women had never known anyone else with heart defects while growing up, they felt disconnected and isolated from their peers. A bond formed quickly, and the sense of isolation was relieved. The feeling was so powerful, that they wanted to share this with other adults and children living with heart defects. For younger children, introduction to other kids with Congenital Heart Defects (CHD) would never know the isolation that the founders felt growing up. After two months of meetings and planning, the paperwork was started to incorporate a charity. On June 23, 2000, the Heart Defects Society of Windsor and Essex County (HDS) officially became an incorporated charity in the Province of Ontario.

In July of 2000, Melissa traveled to Toronto to undergo corrective surgery of her defects, Tetralogy of Fallot. She came home ecstatic that she was pink. She was told to return to Toronto in 5 weeks to have a follow-up catheterization which would complete the surgery. Melissa’s health started to decline and on November 7, 2000, Melissa passed away.

Francine and Claudette felt a deep sense of loss, and suffered through some survivor’s guilt believing that Melissa should not have been the first one to pass. The drive to continue with the charity returned, with a new sense of purpose, since it was well known that Melissa wanted this organization to help others. In February of 2001, our first CHD Awareness Day celebration was held and in July 2001, we then held our first HDS summer picnic.

The HDS hit a lot of hard times over the next little while. The membership didn’t seem to increase and the efforts of the board seemed to be in vain. Claudette’s health was deteriorating. At times, the struggles to keep the HDS afloat seemed to be too great, and though it remained an organization, and CHD Day celebrations and picnics were held, the HDS seemed to be going nowhere.

Claudette traveled to Minnesota for other options for her failing health. Despite a valve replacement surgery, Claudette passed away in December of 2004. Again, Francine was left with a heavy sense of loss. Many times, she feels the old isolation she grew up with re-surfacing. The HDS remained fairly dormant for nearly 3 years.

In the summer of 2006, an article appeared on the front page of the Windsor Star, about a 7 month old baby who was home after receiving a heart transplant. There was a Benefit Dinner being held for the family. This dinner reminded Francine about the reason the HDS was conceived in the first place. As result of this benefit dinner, Francine was convinced to give the HDS one more shot.

Monthly meetings were started in August 2006, to provide information and plan for the future. Two new members were elected to the board of directors and a Pasta Fundraiser was planned for February, 2007. The pasta dinner has become an annual event and is a major cornerstone of our CHD Awareness Week activities.

In 2007, the HDS held their first 5km Walk’N Roll at Assumption Park. A event where you can walk 5km and socialize with others who may have gone and experience the same things. Since 2007 it has become an annual event. The event which originally in the fall was later moved to the spring time. This event has helped raise awareness of CHD, and also had brought in much needed donations to support the Melissa Trothen Memorial Fund.

In 2009, the HDS held their first annual Christine Sorrell Memorial ‘Pooker’ Ride. This event is a motorcycle tour around Essex County to raise awareness on the prevalence of CHD’s in our community and presence of the organization within the community. The ride has quickly become a major contributor to our annual fundraising, grossing over $75,000 in its first three years enabling rapid growth in the amount of MTMF distributions within the local community.

Francine received her heart transplant on the 9th of November of 2009. She had multiple setbacks. It was believed that the complications were minor and that she was doing great, with the exception of some complications with her feet. Francine sadly passed away from a sudden cardiac arrest on September 7, 2010 at Toronto General Hospital.

Since then, the HDS has felt the loss of the three founders. Even with the loss of the founders, the board continues to keep the legacy of the three women alive by raising awareness in the community and helping families whose lives have been touched by congenital heart defects.