Glanzmann’s Thrombasthenia: A Mother’s Sacrifice and Advocacy

Sabina Da Cunha, a 36-year-old mother with a post-graduation in chemistry and a career in Dubai, had everything under control. Her two children were living with her mother in Parra while she worked abroad. However, everything changed in 2019 when her son, Samuel, was diagnosed with Glanzmann’s Thrombasthenia at just one-year-old. This life-changing diagnosis compelled Sabina to return to Goa to care for her ailing son.

Sabina had to forego her career and take up part-time jobs and coconut leaf weaving workshops to make ends meet. Despite the adversities, she faced these challenges with determination and a smile, driven by her love for her children and her desire to give them a normal life.

The Challenges of Glanzmann’s Thrombasthenia

Sabina’s journey with Glanzmann’s Thrombasthenia began when Samuel started displaying bluish-black patches on his body. After several doctor visits and a terrifying incident during the Covid lockdown in March 2020, Samuel was diagnosed with this rare bleeding disorder. The diagnosis brought many challenges, including superstitions, a lack of understanding, and the need for constant monitoring and care for Samuel.

Strength in Adversity

Despite the hardships, Sabina found strength in interacting with many people. She reached out to various individuals and organizations for guidance and support. She also joined the Hemophilia Society (Panjim Chapter) and now serves as the secretary of its women’s wing.

Livelihood and Advocacy

Sabina has been raising her children with her family’s support and takes up part-time jobs to support her family. She also conducts workshops on Mollam weaving, a skill she learned from her parents and grandparents, and has a stall at festivals to generate income.

Advice for Families with Glanzmann’s Thrombasthenia

Sabina emphasizes the importance of providing children with a normal and positive environment. She encourages parents to seek counseling for better bonding with their special child and advocates for increased awareness in schools.

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