MY DISABILITY WON'T

STOP ME FROM BEING A MOM

Filmmaker Simona Bua

Valeria Rodriguez Fontenla, a single mother in Argentina with a debilitating disease, overcomes incredible odds for her daughter.

Valeria Rodriguez Fontenla never doubted that she would one day become a mother. “I believed it would happen when I was 29 or 30 but one day someone read my future and said: ‘You will give birth to a female, earlier than you expect.’”

 

And that was exactly what happened. Valeria was 26 when she learned that she was pregnant. The timing felt all wrong: she was just finishing her Master’s Degree in Molecular Biology and was not in a stable relationship. But there was more.

 

Valeria was 17 months old when she was diagnosed with Spinal Muscular Atrophy (SMA), a genetic disease affecting the nervous system that controls voluntary muscle movement and which, in most instances, requires both parents to be a carrier. SMA is progressive and by the time she was nine, Valeria had lost the ability to stand and walk.

 

At first, doctors only expected her to live until the age of two – then five, eight, 11. She passed each milestone and kept on going.

[Simona Bua/Al Jazeera]

Valeria’s parents were relentless in pursuing experimental treatments that might help their daughter - travelling around the world to meet the best doctors. In 2011, she even received stem cell therapy in China. But they also made sure to treat her exactly as they did her four older, able-bodied, brothers.

 

But when they discovered that she was pregnant, her parents worried for her. Pregnancy is considered extremely dangerous for mothers with SMA and for their babies, and Valeria’s doctors advised her against going ahead with it. When the baby’s father learned of her pregnancy, he disappeared. But Valeria was determined to see it through.

 

“The hardest thing was to find an obstetrician,” she says. “No one wanted to take the risk of attending a patient with SMA, so for the first trimester I had to deal with everything by myself. It was hard sometimes but I never felt in danger and I knew that things would go as they had to.”

 

Lourdes was born in July 2013 – a beautiful, healthy baby girl.

Assali attends German class five afternoons a week. [Ali Gardner/Al Jazeera]

[Simona Bua/Al Jazeera]

The biggest challenge has been economic. “If living with SMA is extremely expensive by itself - I have a wheelchair, a van, a driver, a 24 hour caregiver,” she says, “when you add tonnes of nappies and formula to all that, it can easily cost you a fortune.” But with financial help from her family, health insurance and her income as a teacher, she gets by.

 

Today, Valeria is an independent 30-year-old mother, teacher and biologist who works and takes care of her daughter with the help of her caregiver. And, although she uses a wheelchair and requires 24-hour care, she also travels, dances, swims and takes great joy in watching two-year-old Lourdes as she begins to walk and discover the world around her.

 

In fact, she has enjoyed motherhood so much that she’s about to deliver her 2nd child. It’s a girl.

For more stories like this, visit www.aljazeera.com/shorts

MY DISABILITY WON'T

STOP ME FROM BEING A MOM

Filmmaker Simona Bua

Writer Simona Bua

Assistant Producer Ziad Ramley

Executive Producer Yasir Khan