Haydée Benoit de García: A passion for developing tomorrow’s haemophilia leaders

When her son was diagnosed with severe haemophilia A in Toronto at six months old, Haydée Benoit de García received the support and information she needed to understand the condition and how her son could live his life to the full. On returning to her home country of the Dominican Republic, Haydée set out to ensure families affected by haemophilia in her home country could receive the same level of support.

The challenges Haydée saw amongst the haemophilia community in the Dominican Republic were many: there was little dialogue between people with haemophilia and the medical community, and the lack of information available to parents meant they prevented their children from participating in activities with their peers.

Establishing a support and knowledge network

Determined to provide the same support she had received, in 1996 Haydée teamed up with Dr Rosa Nieves Paulino, Dr Joanne Taveras, nurse Maria Espinal and a small group of parents to create the Fundación Apoyo al Hemofílico (FAHEM), the national patient organisation. This enabled Haydée to pursue one of her ambitions: to hold youth leadership camps for people with haemophilia.

Inspired by the summer camps her son had attended in the USA, Haydée wanted these camps to provide boys with haemophilia the opportunity to learn, play and socialise – experiences that had often been denied them because of misconceptions about their condition.

Mixed emotions and developing friendships

Haydée recalls the first camps, which started in 1999, led to mixed emotions for those involved. For many mothers it was the first time they had been separated from their sons. For the participants, it was the first time some were able to eat three meals a day or sleep in their own bed. “It was so rewarding to see the happiness on their faces when they played baseball or basketball. Through the years, the tears turned into laughs of joy, because at the camp they met friends who shared this experience like brothers,” she recalls.

Besides learning to participate safely in certain sports, the main purpose of the camps was to instil in participants the skills and confidence to become haemophilia leaders, ensuring that the next generation would be ready to continue and build on the work of FAHEM. Describing their approach to leadership development, Haydée says, “The camp has become a laboratory where we have been transforming and analysing the attitudes and skills of our young people.”

Her role in devising the youth camps was instrumental in Haydée winning the NNHF Community Award in 2012. The following year, the NNHF Central America, Caribbean and Venezuela project began, led by Fendi Valdez Bisono, a FAHEM member who had demonstrated promising leadership qualities. The project established a regional network of patient organisations covering nine countries.

Dedicated to pursuing a vision

Throughout the years Haydée has shown an incredible dedication to families affected by haemophilia. Summarising what fuels her, Haydée says, “My son Dámaso and my grandson Enzo have made me renew my energy every day so that the Dominican haemophilia community continues to move forward. My love for them has unleashed this passion that I feel for Dominican people with haemophilia to continue advancing, to continue progressing and above all to have one day the immense joy of knowing that our vision of a better quality of life for all is truly fulfilled.”

Haydée’s vision is now pursued by a new generation of haemophilia leaders who will continue sharing knowledge and building networks for generations to come.

Haydée together with FAHEM is currently working to expand diagnosis and establish a registry in the Dominican Republic through the second NNHF project in the country. It builds on the first NNHF project, which strengthened care in the capital city of Santo Domingo.