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A match that matters

Inspire(Clockwise from left) A still fromThe Sky is Pink, starring Priyanka Chopra and Farhan Akhtar;My Little Epiphanies, written by Aisha ChaudharySpecial Arrangement  

The recent Hindi movie, The Sky is Pink has tugged at many heart strings with its poignant portrayal of how a family deals with an ailing daughter. It is based on the true story of Aisha Chaudhary who lost her life when she was just 18, to pulmonay fibrosis. Aisha may have had a chance to live if she had received perfectly matched stem cells.

Born with SCID (severe combined immune deficiency), a rare condition that leaves children without a functioning immune system, Aisha’s parents were told that her only chance for a cure was to receive a blood stem cell transplant from a matching donor. Without a donor available, the doctors were forced to proceed with a transplant from Aisha’s father who was only a half-match. This desperate move gave her time, but ultimately led to her developing pulmonary fibrosis, a lung disease.

Aditi Chaudhary, her mother, is associated with DKMS, an international non-profit organisation dedicated to the fight against blood cancer and other blood disorders, founded in Germany in 1991 by Dr Peter Harf. “This is the largest registry of stem cell donors in the world with the maximum number of registered donors. Now I want to spend my time educating people about the fact that stem cell donation allows you to save a life. And it is only in your ethnic pool that you will find a fully matched donor. Stem cells can actually help in thalassemia, severe combined immune deficiency and cancers,” says Aditi.

Once a complete match is found, a medical checkup is done on the donor. Then an injection is given for four days to help the marrow produce the stem cells. The donor is put on a machine that collects the stem cells from the blood. It puts the blood back into the donor’s body via the other arm. The recovery time is very quick and there is no real loss of haemoglobin.

Story of love

“Our story is one of love, hope and courage. I am hoping that no one else struggles to find a complete match,” she says.

A braveheart who made an impact that belied her age, Aisha celebrated every moment of her life. She penned down her journey and feelings in her book My Little Epiphanies that has now been relaunched alongside the movie. “I think if we can look at a situation and say, ‘In this difficulty, there is an opportunity’, and think we can rise above it, we can find harmony. Life, I believe, is a school and not a playground. Changes are a given but growth is optional,” says Aditi.

A beacon of hope

Despite her fast deteriorating health, Aisha became an INK Speaker. “It was her father Niren who was invited for a talk and when he spoke about Aisha, it was suggested that she talk as well. However he dismissed the thought as Aisha was shy. But when the topic came up at home, she actually told Niren that he could not decide for her and she would do it because she was scared to do it,” recalls Aditi.

Her topic for the speech was happiness, something she chose consciously at a time when she was confronted with death. For a child who was bullied in middle school and needed therapy to overcome this, one of the epiphanies in her book was to rise above people who want us to fail.

“I read somewhere that life is not measured by the breaths we take but the moments that take our breath away, and I hope that we have so many Indian stem cell donors that it takes my breath away,” she signs off.


How to donate

  • Go to www.dkms.org/aisha and register as a stem cell donor.

  • You will need to give a swab from your mouth and cheeks which has your DNA in them.

  • Your DNA is then recorded on a file and bar coded and kept confidentially.

  • Whenever there is a requirement and the DNA is matched, you can help save the life of your DNA twin.