On July 10, 2026, my sister Jyo—known to many as Kareena after her marriage—passed away after being diagnosed with Creutzfeldt-Jakob Disease (CJD) at the end of May.
She was healthy, active, and full of life. When the first symptoms appeared, we all assumed they were stress-related or something that could be treated. None of us imagined that within just eight weeks, we would lose her to one of the most devastating and rapidly progressive neurological diseases.
Jyo was one of the most loving, caring and kindest person I have ever known. She loved unconditionally, without expecting anything in return. Whether it was family, friends, colleagues, or even someone she barely knew, she always showed up with compassion, kindness, and genuine care. Her unwavering faith in Shirdi Sai Baba was the foundation of her life, and it gave her remarkable strength and courage to face a diagnosis that no family is ever prepared to hear.
Spending time with her during her final weeks allowed me to know her not just as my sister, but as an extraordinary human being. As an Assistant Head Teacher, she touched countless lives through her dedication, humility, and kindness. The outpouring of love from her students, colleagues, friends, and community reminded me of just how deeply she had impacted those around her.
She found joy in life’s simplest moments. Her world revolved around her husband, daughters, son-in-law, and her precious six-month-old grandson. She lived with gratitude and never forgot to pray. She had a rare gift of making everyone she met feel valued and loved.
To honor Jyo’s memory and to help raise awareness for this rare and devastating disease, I will be participating in Strides for CJD this October.
Today, there is still no cure for CJD, and far too many families only learn about this disease after it has already turned their lives upside down. By sharing Jyo's story, I hope to raise awareness, encourage support for research, and help move us closer to a future where no family has to experience this devastating journey.
Like so many families affected by CJD, I am left with one overwhelming question: What causes this disease? While research has advanced our understanding of CJD in many ways, there is still so much we don't know about why it develops, particularly in those who appear healthy and have no known risk factors. Every family deserves answers.
Because CJD is rare, it often receives far less attention and funding than more common diseases. Yet its rarity should not diminish its importance. The speed with which it progresses, the profound suffering it causes, and the devastating impact it has on patients and their loved ones should be reason enough to invest in meaningful research. Increased awareness, greater funding, and a stronger commitment to scientific discovery are essential if we hope to better understand this disease, improve diagnosis, develop effective treatments, and ultimately find a cure.
If you would like to support this cause, I would be deeply grateful if you would consider donating or sharing my fundraising page.
https://secure.qgiv.com/event/stridesforcjd2026/team/1040903
Thank you for helping us honor Jyo’s beautiful life and for standing with everyone affected by CJD.
#StridesForCJD #CJD #CreutzfeldtJakobDisease #RareDisease #Fundraising #RaiseAwareness #InMemory #Hope #Research
Shelmi Matta