My late sister’s birthday prompts reflection on being siblings with CF

What it was like growing up with a sister who had the same rare disease

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by Tré LaRosa |

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A few days ago marked what would have been my sister Alyssa’s 37th birthday. To pay homage to her this year, I’m reflecting on what it’s like to have cystic fibrosis (CF) myself as well as a sibling with CF.

When people learn that individuals with CF are advised to stay six feet apart, they commonly ask how we managed this “rule” in our household. In our case, we did not. We were certainly more careful when either of us was sick, but otherwise, we didn’t dramatically alter our lives. It’s hard to know if it would’ve made any difference for us health-wise. Honestly, I feel like it would’ve made our lives even more difficult.

A teenage girl, about 16 or 17 years old, sits behind the wheel of a car with her arms outstretched in front of her. She's wearing a long-sleeve black-and-white striped shirt and has her head turned to the right, smiling at the person taking her photo.

Alyssa LaRosa poses behind the wheel at about 16 or 17 years old. (Courtesy of Tré LaRosa)

Growing up with a rare disease like CF can make you feel abnormal or like an alien. Children already struggle to make sense of the world without CF. Alyssa made me feel much safer and more normal. She was the only other person I knew who understood this identity.

Alyssa, who passed away in 2018, was outgoing and charismatic. Like anyone, she had dreams, ideas, and fears. She was resilient and brave, except when it came to needles, which made me chuckle. Alyssa taught me a lot and was protective of me. She was also funny: She cheered when she learned I’d been diagnosed with CF. She was a wonderful person and big sister.

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The challenges

But having a sibling with CF was also hard at times. I worried a lot about my sister. It sucked seeing her in the hospital. I didn’t understand why my life seemed so easy compared with hers. Even though we both had CF, I never faced many of the challenges she did, such as difficulty gaining weight and frustrations with school administrations and peers. Sometimes it felt like the cards were stacked against her. As her little brother, I felt helpless to do anything, no matter how badly I wanted to. I pressured myself to reduce others’ worries by doing everything I could to avoid getting sick.

A brother and sister, both in their 20s, wearing matching white Christmas sweaters decorated with red and green bows.

Tré and Alyssa LaRosa smile for a photo in December 2017, three months before Alyssa died. (Courtesy of Tré LaRosa)

As I got older, I began worrying about my sister dying. I felt guilty and horrible for even thinking about it, but her health was fading quickly. I didn’t know how to process anticipatory grief; I panicked, wondering how my parents and I would process her death. The thought made me nauseous. Refusing to ignore this real possibility forced me to process the world around me. And because I had CF, too, I had to consider that a premature death might also be my fate.

History doesn’t repeat itself, as the saying goes, but it often rhymes. In the case of our family, that looks like two generations of men having a sister with CF. My father was the older sibling, but like Alyssa and me, he and his sister, Renée, had a six-year age gap. My dad does not have CF, but he also lost his sister to this horrible disease.

I wonder if knowing that my dad lost his sister made it feel inevitable that I would also lose mine. I am grateful my parents were so supportive. Despite all the abnormal parts of my childhood, they did a great job of making our lives feel normal.

Looking back, my relationship with Alyssa was like that of most other siblings, which is exactly how I wanted it. CF added complications that most people don’t have to think about, but sharing this disease allowed for moments of humor that strengthened our bond and diffused the tension of life with chronic health issues.

Just three months before her death, we created one of my favorite memories: one of the last times I made my sister laugh until she coughed and cried. Just a week before she died, we were still joking and bickering as siblings do.

It’s difficult knowing my sister was only alive for a portion of my life, but I’m grateful for the time I had with her. She had a profound impact on our family and many others. I look forward to telling my future kids about their Aunt Alyssa. She would’ve been the best mother and aunt, just as she was the best sister.

Happy 37th birthday, Alyssa. The world isn’t the same without you.

A family of four, all wearing matching purple T-shirts, poses for a photo at the Cystic Fibrosis Foundation's Great Strides event. They're holding up a sign that says "65 LaRosas."

From left, Frank, Sue, Tré, and Alyssa LaRosa take a family photo about a year before Alyssa’s death in March 2018. (Courtesy of Tré LaRosa)


Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.

Pete Sutherland avatar

Pete Sutherland

I enjoyed your story. It opened up feelings that I have as a parent of an adult CFer. She’s my 34 yr old daughter. Before Trikafta I was very depressed with the stress of her impending death which was a very real possibility given how sick she was before Trikafta saved her life. The thoughts are still there but I try to have more enjoyable times given she has been so well since. I haven’t talked to my other two children who are just carriers. I wonder what they must have been going through as well knowing how sick their sister was.
Anyway, very sorry about your loss of your special sister. Thanks for opening up to us all. Your thoughts make it easier to talk about and not be ashamed of having those same types of feelings as a parent and a healthy sibling. Cheers!

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Tami Dixon avatar

Tami Dixon

Aloha
I myself have cystic fibrosis alpha one MZ and cancer....on top of all the other CF related diseases etc...I am my Drs oldest living patient & just celebrated 2 years birthday on TRIKAFTA & my life story very interesting as most my age late diagnosed etc...
At 62 drs & scientist call me a gross freak of nature..as I am so very sick however so very physically healthy too...
Please let me know if you're interested in my survival story 🙏
Mahalo
Tami Dixon

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