A Mother's Journey with Cystic Fibrosis

On this Mother’s Day, we want to celebrate the incredible strength and resilience of mothers everywhere, and in particular those who have children with chronic illnesses. Shwetha Sree is one of these mothers. She has devoted her life to caring for her five-year-old son Vihaan, who has cystic fibrosis (CF).

Shwetha shares her story with us: 

“It all started when Vihaan had bowel obstructions twice in the space of two weeks when he was just 18 months old. His doctor sent samples for genetic testing, and we received the news that Vihaan had CF. At that moment, our whole world changed.

Dealing with the diagnosis was difficult. We felt hopeless; emotionally and financially drained. But my husband and I decided that we were going to do everything in our power to make sure Vihaan received the best care possible. We began learning about CF through doctors, the internet and other sources, and slowly rebuilt our lives, moving away from that stage of helplessness. We started to see things in a different way and realised how much the little things matter.

Vihaan is now five years old and has been in good health for the past two years. However, since March last year, he has been falling sick frequently due to tonsillitis and sinusitis. Despite the challenges, Vihaan accepts everything wholeheartedly with a big smile. He is smart, mature, responsible, and creative, and loves doing puzzles, colouring, and reading. He is also interested in cooking, taking photos, and making videos.

Shwetha helps Vihaan with his physiotherapy after a session with the nebulizer.

As a mother, I know firsthand how challenging it can be to care for a child with CF. That's why I advocate for greater access to life-saving drugs. Every family affected by a chronic illness deserves affordable and accessible healthcare.”

This Mother’s Day, we honour mothers like Shwetha who have dedicated their lives to caring for their children with CF and advocating for access to lifesaving medication. Their strength and resilience are an inspiration to us all.

Shwetha is one of dozens of CF parents across the world that we are working with on a global campaign to challenge the monopoly of pharma drug giant Vertex. This company is currently charging a staggering $326,000 a year for lifesaving CF treatment - pricing it out of reach for so many families like Shwetha’s.

We’re fighting to change that - find out more here!