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I lost my baby son to cystic fibrosis. My daughter deserves Vertex's drugs to ensure a healthy life.

Hi, I'm Sindhuja, mother to my three-and-a-half-year old daughter Vishaka who has cystic fibrosis (CF). We live in India. She was diagnosed with CF at the age of two years six months when she was admitted to hospital and also tested positive for Covid-19.

Looking back, Vishaka didn't show any symptoms of CF until her first birthday. After that she didn't gain any weight. At 18 months she started having colds and coughs which didn’t respond to treatment and were just ongoing.

So her doctors gave her treatments for allergies and asthma. But her cough didn't go away for nearly nine months. Literally she was just skin and bones – failing to thrive. There was no flesh left on her body.

One day she was having breathing issues and got admitted into a specialised hospital where the doctors immediately suspected that she might have cystic fibrosis. After that she also got a positive result for Covid-19. She was on a ventilator for seven days and remained in hospital for 21 days. Her weight was very much decreased because of Covid-19. She has been admitted a further three times for IV antibiotics since being diagnosed with CF. Now with a proper diet and enzymes to help her digest her food she is doing well and maintaining her weight.

Vishaka is my second child.

My first baby was a son, Sai Kaushik, who had meconium ileus in his intestine while I was pregnant and had to undergo surgery after he was born. The video on the right, shows him when he was four months old, coughing and failing to thrive.

Heartbreaking to see - devastating to endure as his mother. That is why I am fighting so hard for my daughter's health.

My son fought for over four months and slept continually. He had constant digestion problems and a continuous cough for the last two months of his life. Tragically without the correct diagnosis and treatment, my son died. Following Vishaka’s diagnosis, I now understand that he also had cystic fibrosis, but it was not diagnosed or even suspected at the time.

Actually when my daughter was admitted for Covid-19, I was almost relieved that she was diagnosed with CF so that we could treat her. It was really horrible when she suffered and I couldn't do anything for her. Now I'm so relieved that we know what the problem is with her and how to treat it. When she sleeps without any cough I feel like I have accomplished something.

But still she needs access to gene modulator therapies for her future healthy life. I hope she gets these life-changing drugs. I have lost one child to this disease and I don’t want to lose another soul. Knowing that there is a medicine that can help, it makes me very sad that we can’t have the medicine to make life easier for my child.

Vertex Pharmaceuticals who make drugs like Trikafta, have to give it to all the needy people at an affordable price. And our Government in India has to support the CF patients too.


Above: Vishaka before her diagnosis


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