Ekaterina Belova, a mother of five, including a son with spinal muscular atrophy (SMA), is finding strength and purpose through stand-up comedy and advocating for inclusion. Belova, whose seven-year-old son Petya has SMA type I, the most severe form of the disease, uses her experiences to break down stigmas and raise awareness about the challenges faced by families raising children with severe disabilities.

SMA is a genetic disease that causes muscle atrophy and requires round-the-clock medical support. Belova’s life changed dramatically after Petya’s birth, requiring her to quit her job and dedicate herself to his care. With the help of the Lighthouse Children’s Hospice, she was able to regain some time for herself and her family, eventually returning to teaching yoga and exploring stand-up comedy.

Belova’s advocacy extends to fighting discrimination and promoting inclusion. She enrolled Petya in a regular kindergarten to challenge societal norms and create opportunities for socialization, despite the lack of accessible infrastructure and trained staff.

The family faced numerous challenges, including navigating bureaucratic hurdles to secure treatment for Petya and dealing with the emotional and physical toll of caring for a child with complex needs. Belova emphasizes the importance of support for families raising children with palliative care needs, highlighting the risk of poor health and depression due to the constant stress and lack of personal time.

Through stand-up comedy, Belova hopes to reach a wider audience and educate people about the realities of raising children with disabilities. She believes that humor can be a powerful tool for breaking down barriers and fostering understanding.