Arjun’s Planet-Sized Spirit

My son, Arjun, has had the deck stacked against him in some ways. He was born early, with cystic fibrosis, and needed surgery. His resilience, and my hopes for his future, keep me inspired.

| 3 min read
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Arathi Cole
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Arjun pooped. Everybody does. There's a book about it. So, the fact that my son, Arjun, pooped might not seem like a big deal to some. But, because Arjun pooped, he avoided having intestinal surgery. Arjun just turned 4 years old, and he has already had nine intestinal surgeries, so it was a huge relief to my husband, Charlie, and me.

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We often say, “You'd never know by looking at him, that he's been through so much.” He has, though, believe me. He was born at 32 weeks and needed surgery for an intestinal blockage (meconium ileus) a few days later. Arjun has spent more than 6 months of his short life in the hospital.

He also has a growing awareness of his CF and the daily burden it places on him. He has grown to hate IVs, nasogastric (NG) tubes, and throat cultures. He increasingly resists doing his daily airway clearance treatments.

But Arjun is a resilient kid, and his personality is infectious. He's the one who lifts our spirits when he's in the hospital, joking with us and members of his care team, bringing a smile to their faces even though he's sick.

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In spite of his CF, Arjun leads a pretty normal, active life. In addition to attending preschool, he has taken up gymnastics and swimming. This Halloween, he decided to dress up as the Earth because he loves planets. Do you know what a dwarf planet is? Neither did I. Arjun will explain it to you and tell anybody who will listen all about planets.

Charlie and I are numbers people. We do our research. We trust the quantifiable. We know that if Arjun had been born in the 1950s, we wouldn't have been able to imagine the kind of future for him that we can now. Now, more than half of people with CF are older than 18. Many are finishing advanced degrees, getting married, and having children of their own.

That's why we have so much respect for the CF Foundation, what it has accomplished, and its ambitious plans for the future. We are encouraged by new medications, like Kalydeco® and Orkambi®, that have been developed recently. For people with certain mutations, these medications treat the underlying defect of CF, and they promise longer, healthier lives to those who can benefit from them. Clinical trials of the next generation of these drugs may be even better.

We hope for a long, healthy life for Arjun. But, his mutations are rare, and like many with CF, he will not benefit from either Kalydeco® or Orkambi®. That's why we advocate for new treatments that can help people with rarer mutations like Arjun, and other children and adults with CF, and one day, a cure. That's why we're making a donation to the Cystic Fibrosis Foundation and why we are asking you to do the same.

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Topics
Fundraising | Clinical Trials
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Arathi is the mother of Arjun, 4, who has CF. She has an MBA from the NYU Stern School of Business and a B.S. from the University of Maryland Smith School of Business. She is a director at American Express, and active fundraiser for the Los Angeles Office of the Cystic Fibrosis Foundation Southern California  Chapter. She lives in Los Angeles with her husband, Charlie, and Arjun. 

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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.