By Dr N K Singh,Editor: CME INDIA

How I Discovered “65 Roses”

• As an internist, I was genuinely surprised that I hadn’t encountered the term “65 Roses” until January 1, 2025. That evening, my wife was browsing Netflix, and I casually suggested watching the Hindi movie Hi Papa. Honestly, I had no prior knowledge of the film.
• Hi Papa, a Hindi-language romantic drama, was released on December 7, 2023, under the direction of Shouryuv. The movie stars Nani as Viraj, a professional photographer and single father to his six-year-old daughter, Mahi, played by Kiara Khanna. Mrunal Thakur portrays Yashna, a key character who becomes deeply connected to their lives.
• The film beautifully captures the profound bond between father and daughter, weaving themes of love, responsibility, and the trials of single parenthood. Garnering an impressive 9.5/10 audience rating, it resonated deeply with viewers.

The metaphor of “65 roses” becomes an emotional thread in the story

• One of the poignant aspects of the movie is its portrayal of “65 Roses,” a term often used by children to describe cystic fibrosis. Through Mahi’s character, the film sheds light on this life-threatening genetic condition, making it both emotionally impactful and educational.
• In the Hindi movie “Hi Papa”, the character of Mahi, played by Kiara Khanna, is a central figure in the emotional narrative. Mahi is a vibrant and imaginative six-year-old girl who shares a deep bond with her father, Viraj (played by Nani). Despite her joyful demeanor, Mahi battles cystic fibrosis, a genetic condition that primarily affects her lungs and digestive system.
• The metaphor of “65 roses” becomes an emotional thread in the story, representing Mahi’s condition. This phrase stems from a real-world anecdote where young children, unable to pronounce “cystic fibrosis,” would say “65 roses” instead. In the film, this imagery is used to highlight Mahi’s innocence and her father’s undying love and care for her.
• Mahi’s struggle with cystic fibrosis adds depth to the narrative, showing how her father navigates the challenges of single parenthood while providing her with the best life possible. Her character serves as a symbol of resilience and hope, making her journey profoundly touching for the audience. The film sensitively portrays her condition and her father’s relentless efforts to ensure she experiences life to the fullest, despite her health limitations.

The term “65 Roses” has grown beyond its origin as a simple mispronunciation to become a heartfelt and symbolic representation of the cystic fibrosis (CF) community.

Origin of “65 Roses”

• In 1965, Mary Weiss was making calls to raise funds for cystic fibrosis research. Her son, Richard Weiss, who was just 4 years old, overheard her saying “cystic fibrosis” multiple times.
• Being a complex term for a child, he simplified it to “65 Roses,” which sounded phonetically similar to his ears.
• The family and CF community adopted this mispronunciation as a poignant and relatable way to refer to the disease, especially for young children.

Emotional and Symbolic Resonance

• The Rose Symbol: The rose is often associated with beauty and resilience, mirroring the strength of individuals and families affected by CF. It conveys love, hope, and a commitment to finding a cure.
• Ease for Children: For young patients and their siblings, “65 Roses” makes it easier to discuss a complex and often frightening condition.
• Universal Appeal: The phrase transcends language barriers and is widely recognized as a compassionate emblem of the CF community.

Use in Awareness and Fundraising

• Artwork and Campaigns: Roses are commonly featured in logos, awareness merchandise, and promotional materials for CF foundations and events.
• “65 Roses Day”: Some CF organizations, such as Cystic Fibrosis Canada, host annual “65 Roses” fundraising campaigns.
• Inspirational Stories: The term has inspired books, songs, and art, spreading awareness and creating a sense of unity among those impacted by CF.

Cultural Impact

• Movies and Media: The 2019 film “Five Feet Apart” drew attention to CF, highlighting the struggles and resilience of people with the condition. Although not directly linked to “65 Roses,” the film contributed to broader awareness of CF, reinforcing the rose’s symbolic connection.
• Literature and Memoirs: Books like “Breath from Salt” delve into the history of CF research and the community’s efforts, often touching on the significance of “65 Roses.”

Broader Message

The phrase “65 Roses” serves as a reminder of:

1. The importance of compassion and understanding in dealing with chronic illnesses.
2. The need for ongoing research and advocacy to improve the lives of those with CF.
3. The strength and resilience of the CF community, symbolized by the enduring beauty of a rose despite the challenges it faces.

In summary, “65 Roses” has evolved into a powerful metaphor that represents hope, resilience, and the collective efforts of families, patients, and researchers striving to overcome cystic fibrosis.

CME INDIA Learning Edge

• The “65 Roses” story began in 1965 when Mary Weiss, a mother of three boys with cystic fibrosis (CF), worked as a volunteer for the CF Foundation. Her 4-year-old son, Richard, overheard her calls seeking donations and mispronounced “cystic fibrosis” as “65 Roses.” This touching moment gave rise to the term “65 Roses,” which has since become a symbol of the disease, representing hope and love.
• Cystic fibrosis is a life-threatening genetic condition affecting over 40,000 people in the U.S. Tragically, Richard passed away in 2014, and Mary in 2016, leaving behind a legacy of advocacy and support for CF research and care.
• The CF Foundation continues to honor their legacy through initiatives like the “65 Roses Club,” which funds research, drug development, and specialized care. June 5 (6/5) is celebrated as “65 Roses Day,” symbolizing ongoing efforts to find a cure and improve the lives of those with CF.

CME INDIA Tail Piece

• Cystic fibrosis (CF) is a genetic condition that affects mainly the lungs, digestive system, and other organs with mucus-producing cells. It’s caused by mutations in the CFTR gene, leading to:

• Thick Mucus: This clogs the airways, making breathing difficult and increasing infection risk in the lungs.
• Digestive Problems: The pancreas can’t release enzymes properly, leading to malnutrition, poor growth, and frequent, greasy stools.
• Reproductive Issues: Often causes infertility, particularly in males due to blocked or missing vas deferens.

• Diagnosis typically involves newborn screening, genetic tests, and the sweat test which measures salt content in sweat.

• Treatment focuses on symptom management:
• Airway clearance techniques and antibiotics for lung health.
• Pancreatic enzyme supplements and nutritional support for digestion.
• CFTR modulators for some genotypes to improve protein function.
• In severe cases, lung transplantation can be considered.

• Prognosis has improved, but life expectancy varies with individual health and treatment response. Based on 2019 data, the Cystic Fibrosis Foundation Registry Report in the U.S. predicted that a child born with cystic fibrosis that year could expect to live to a median age of 48.4 years, marking significant progress in CF care. Data from registries in the U.K., Canada, Belgium, Europe, Australia, France, and Ireland indicate a median survival age range of 44 to 53 years, with median ages at death from 29 to 35.6 years. This extended life expectancy presents both a victory and a challenge, as CF patients now face age-related health issues alongside their primary condition. The focus in this discussion is on U.S. advancements, exploring how these improvements were achieved, identifying areas for further improvement, and considering future therapeutic strategies.

References

1. https://www.cff.org/about-us/65-roses-story
2. McBennett KA, Davis PB, Konstan MW. Increasing life expectancy in cystic fibrosis: Advances and challenges. Pediatr Pulmonol. 2022 Feb;57 Suppl 1(Suppl 1):S5-S12. doi: 10.1002/ppul.25733. Epub 2021 Nov 11. PMID: 34672432; PMCID: PMC9004282.
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