Diwali and cystic fibrosis: How our community are celebrating this year

Dealing with a CF diagnosis

Vihaan was diagnosed at 21 months. He had bowel obstructions twice in the space of two weeks when he was 18 months old. His doctor sent samples for genetic testing and they officially confirmed that Vihaan had CF. Vihaan is now five and has been in good health for the past two years, but since March this year he has been falling sick frequently due to tonsillitis and sinusitis.

After Vihaan’s diagnosis, our perspective towards life changed. We were down emotionally and financially, and we felt hopeless. We began learning about CF through doctors, the internet and other sources and rebuilt our lives, slowly moving away from that stage of helplessness. We started to see things in a different way and we realised how much the little things matter. We decided that whatever we did next was going to be the best for Vihaan and we started to teach him about his diagnosis at an early age. He now understands his diagnosis completely.

Vihaan accepts everything with a smile

Vihaan is smart, mature, responsible, and creative. He can be shy initially with new people, but once he connects, he enjoys their company so much. He is inherently positive and spreads love wherever possible. He accepts everything wholeheartedly with a big smile.

Vihaan loves to do creative activities such as puzzles, colouring, and reading. He is also interested in cooking, taking photos and making videos.

Celebrating Diwali as a family

Celebrating Diwali with a child with CF definitely looks different now. We celebrate as a family by wearing new clothes, illuminating the interiors and exteriors of the house with diyas (oil lamps), colourful lights and rangolis. Usually there are firecrackers, but we no longer use them because of Vihaan's CF. We perform worship ceremonies of Lakshmi, the goddess of prosperity and wealth, and bommala koluvu (idol and doll display) which is a traditional ritual of Telangana (a state in Southern India) during Diwali.

For any festival we follow the same precautions, but for Diwali we exercise some extra care and attention. On Diwali day we do not invite people over to our apartment like we used to. We prefer to celebrate the festival at home rather than going outside because of his CF. While festivals are not the same as they used to be, we want the vibe of the festival to be the same for Vihaan so we video call our nearest and dearest so he doesn't miss the feeling of being with people. I also make all the sweets with dates and jaggery, and do a calorie count of everything I cook and plan so that every food item Vihaan eats is suitable for the enzyme dosage. Pre-Diwali shopping is the most exciting part for Vihaan. He also loves lighting the diyas, eating the festive sweets and decorating the idols.

My advice for other parents

If I had any advice for other parents of someone with CF it would be not to hesitate to seek help from other people in the CF community. When Vihaan was diagnosed with CF, we as parents had no clarity on what to do and what not to do. We felt that there wasn’t much awareness about CF in India and so we decided to start a CF page on social media (@vihaan_cfindia). We wanted to support and create awareness as much as we can. For us, it’s all about empathy: we felt no parent should feel as helpless and clueless as we did, so we are trying our best to raise awareness. 

Our hopes for the future

Our hope for Vihaan’s future is simply that he is happy, healthy and peaceful. We will support and encourage him in every way possible and we don’t want CF to be a barrier for him to reaching his goals. For us a life unlimited would be living life to the fullest, irrespective of CF. We want to be able to experience the joy of today rather than worrying about tomorrow.

You can follow Vihaan’s CF Instagram account (run by Shwetha) at @vihaan_cfindia.

If you'd like to celebrate Diwali, or any of the festive holidays, while raising money for to help everyone with CF live a life unlimited, you can find out more here. 

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing. 

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