Keya Battles SMA

14/04/2025

💥Coming Soon!!
My new podcast series

🎙THE LIMITLESS EDITION

▶️Teaser :
https://youtu.be/Oee6LoRunIw

In this series, we're bringing you real and remarkable conversations with young achievers who are redefining limits of possibilities.

From breaking barriers to reaching unfathomable heights of success, these young changemakers will leave you speechless, inspired, and ready to dream bigger.

What to Expect:
✨ Stories of resilience and courage
🚀 Achievements that push past limits
💥 Moments that will wow you.

Subscribe now and hit the bell icon 🔔 to stay tuned.

~
Your friendly host
Keya Hatkar

Coming Soon – The Limitless EditionThis season, we're bringing you real, and remarkable conversations with children and young adults who are redefining what'...

12/04/2025

Spinal Muscular Atrophy (SMA) is one of the 7000 known rare diseases in the world today. It is well known by now for having the world most expensive cures attributed to itself, which are highly inaccessible to any patient in India.

These obnoxiously expensive life-saving SMA treatments have been in the news off late, owing to the several ongoing legal litigations by patients from all across India, pleading for right to live and access to cure.

Legal intervention is the only resort left to pave the way for manufacture of a cheaper generic drug made in India for these hopeful SMA families, who are tired of seeing their children debilitate with a progressive fatal condition like SMA.

SMA does not just affect one individual's life. It changes the outlook and the way, the whole family lives. Watch this episode to understand the ins and the outs of one such family...OURS!

Thank you Sam for rolling out this series, featuring young Indians living remarkably, unbeaten by their odds
https://youtu.be/Zrdb88AIAVQ?si=bmICwTtJUjhwEF1T

Keya Hatkar is a 14 year old kid, who has been fighting since she was born & winning :) She is an author, youTuber & podcaster, tedX speaker, recently receiv...

02/04/2025

Attended the National Awards & Exhibition Ceremony at the National Young Authors' Fair ( ) in Gurugram.

Inspiring to witness young minds shaping the future through storytelling and creativity. Their passion for literature and innovation reflects the limitless potential of India's youth.

Grateful to Bri Books and all stakeholders for fostering a culture of knowledge and empowerment. Wishing these young authors great success in their journey ahead!

25/03/2025

( the only foreign drug treatment (by Roche)available for in India) can now be made (generic drug) in India by local Pharma NATCO.

Hoping this makes the drug treatments for SMA accessible & affordable for all those affected in India.🤞✨

What, when, who, how? Read these 👇✨️

It's said when there is a WILL THERE HAS TO BE A WAY.🤞✨

Super proud of our SMA warriors and self-advocates who took it upon themselves to carve their own destiny refusing to lay down and die in silence.✨️💪

Remember the moto we at I M Possible & SMAART chose for this year...✨✨

Yes it's time to !✨🙌

News Links :

Economic Times :
https://m.economictimes.com/industry/healthcare/biotech/pharmaceuticals/delhi-hc-rejects-roches-plea-to-block-natco-pharma-on-risdiplam-patent/amp_articleshow/119435137.cms

Money Control:
https://www.moneycontrol.com/news/business/companies/delhi-high-court-denies-injunction-on-roche-s-rare-genetic-disease-medication-12974607.html/amp =From%20%251%24s&aoh=17428976049895&referrer=https%3A%2F%2Fwww.google.com

The Wire : https://m.thewire.in/article/health/delhi-high-court-relief-spinal-muscular-atrophy

PLEASE SHARE, THIS NEEDS TO REACH EVERYONE WHO NEEDS TO BE MADE AWARE.

The Delhi High Court denied Roche's request to temporarily restrain Natco Pharma from producing its spinal muscular atrophy drug, citing public interest and high prices. Natco is required to maintain detailed financial records and may owe damages if Roche ultimately wins the case.

21/03/2025

Podcast Series: HEROES OF INCLUSIONEpisode 21 : SHIVANI DHILLONChandigarh, IndiaAward Winning Social Entrepreneur, Therapeutic Storyteller, Ex BBC Journalist...

21/03/2025

💊 *Access Denied's first episode is out*

🗣️ Jyotsna Singh interviews Saifullah Khalidi, a patient advocate living with spinal muscular atrophy, who talks about his and other patients' legal battle in the Indian Court fighting for access to essential treatment.

*YouTube* 📺 https://youtu.be/GrmgH8U1ZJo
*Spotify* 🎧 https://shorturl.at/hRG7G

Please like and share to support our cause.🙏✨

From a very early age, Saifullah’s parents noticed delays in his development. But in the 1990s, information about his rare genetic disorder was scarce, and o...

08/03/2025

Happy Women's Day to All.

This Women's Day let's make each one of us believe " I M Possible! "

Here is how we celebrated the day..

Women's Day Event Organised by the State of Maharashtra - "Beti Bachao, Beti Padhao" is one we have been awaiting the whole of this year.

Keya has been nominated as one of the 10 selected awardees from the entire state of Maharashtra, across all age groups and all life skill categories combined, for her remarkable achievements in Arts and Literature.

Keya was felicitated for her achievements by our Honourable Governor of State, Shri C. P. Radhakrishnan , Honourable Chief Minister of State Shri Devendra Fadnavis and Minister of Women & Child Development, Smt.Aditi Varda Sunil Tatkare this morning along with several notable dignitaries present. This was truly an honour for Keya and her entire family.

None of this would have been possible without the love, support and blessings of all those who have constantly backed this child, right from the beginning of her journey.

The arrival reel :
https://www.instagram.com/reel/DG7RCoANx-q/?igsh=MWM1ZnRnYTdvM21uZw==

Glimpses of the event :
https://www.instagram.com/reel/DG8BZ_PMWYH/?igsh=MXJuNndpY2l4cmVmcQ==

Live coverage:
Keya's Award Ceremony byte from 26th minute in this video.🙏🏻✨️

https://www.youtube.com/live/gw4NfDpDaGM?si=beHaaRzf1do7qmwW
https://www.youtube.com/live/zo3aUl49NW0?si=Bk3pOSAA3AV3W4On

05/03/2025

A very informative and crucial podcast on the changing scapes of fetal genetics and fetal medicine in our Country.

Thank you Anuradha Acharya for putting this together on your platform.

Do have a listen.🙏🏻✨🤞

https://youtu.be/R9VRg0DWNRw?si=KLUv4nlU-lsGoijQ

In this episode of Genomic Gupshup, Anu Acharya sits down with Dr. Seema Thakur, a leading expert in Prenatal and Pediatric Genetics, to explore the impact o...

03/03/2025

14 years ago in 2011, Keya's life was written off as 𝗜𝗠𝗣𝗢𝗦𝗦𝗜𝗕𝗟𝗘!, owing to her medical diagnosis with a life threatening genetic disorder called 𝗦𝗽𝗶𝗻𝗮𝗹 𝗠𝘂𝘀𝗰𝘂𝗹𝗮𝗿 𝗔𝘁𝗿𝗼𝗽𝗵𝘆.

On 28𝘵𝘩 𝘍𝘦𝘣 2025, 14 𝘺𝘦𝘢𝘳𝘴 𝘭𝘢𝘵𝘦𝘳, Keya was invited to give a motivational talk with a tag line - 𝗜 𝗠 𝗣𝗢𝗦𝗦𝗜𝗕𝗟𝗘! at the 𝘕𝘢𝘵𝘪𝘰𝘯𝘢𝘭 𝘊𝘦𝘯𝘵𝘳𝘦 𝘧𝘰𝘳 𝘉𝘪𝘰𝘭𝘰𝘨𝘪𝘤𝘢𝘭 𝘚𝘤𝘪𝘦𝘯𝘤𝘦𝘴 on the occasion of the 𝗪𝗼𝗿𝗹𝗱 𝗥𝗮𝗿𝗲 𝗗𝗶𝘀𝗲𝗮𝘀𝗲 𝗗𝗮𝘆 organized by 𝘛𝘢𝘵𝘢 𝘐𝘯𝘴𝘵𝘪𝘵𝘶𝘵𝘦 𝘰𝘧 𝘎𝘦𝘯𝘦𝘵𝘪𝘤𝘴 𝘢𝘯𝘥 𝘚𝘰𝘤𝘪𝘦𝘵𝘺 (𝘛𝘐𝘎𝘚) 𝘢𝘯𝘥 𝘕𝘊𝘉𝘚.

𝗩𝗶𝗱𝗲𝗼 𝗟𝗶𝗻𝗸 : https://youtu.be/kCIFNrxcI0E

Life indeed has come a full circle for Keya and us as a family. 𝘈 𝘫𝘰𝘶𝘳𝘯𝘦𝘺 𝘸𝘪𝘵𝘩 𝘴𝘵𝘢𝘳𝘵𝘦𝘥 𝘸𝘪𝘵𝘩 𝘢 𝘕𝘖 𝘣𝘶𝘵 𝘵𝘶𝘳𝘯𝘦𝘥 𝘪𝘯𝘵𝘰 𝘢 𝘠𝘌𝘚, 𝘰𝘸𝘪𝘯𝘨 𝘵𝘰 𝘴𝘩𝘦𝘦𝘳 𝘨𝘳𝘪𝘵, 𝘸𝘪𝘭𝘭 𝘱𝘰𝘸𝘦𝘳 𝘢𝘯𝘥 𝘥𝘦𝘵𝘦𝘳𝘮𝘪𝘯𝘢𝘵𝘪𝘰𝘯.

While modern science is still looking for affordable cure, Keya has only 𝘖𝘕𝘌 𝘔𝘌𝘚𝘚𝘈𝘎𝘌 𝘛𝘖 𝘚𝘏𝘈𝘙𝘌 𝘞𝘐𝘛𝘏 𝘛𝘏𝘌 𝘞𝘖𝘙𝘓𝘋! - 𝗣𝗥𝗘𝗩𝗘𝗡𝗧𝗜𝗢𝗡 𝗜𝗦 𝗧𝗛𝗘 𝗞𝗘𝗬! . For that to happen, ample 𝗔𝗪𝗔𝗥𝗘𝗡𝗘𝗦𝗦 needs to be created.

Thank you team Organization For Rare Diseases India(ORDI) Tata Institute for Genetics and Society, India, (TIGS) and National Centre for Biological Sciences - NCBS for giving Keya this valuable opportunity to speak and inspire those who attended the event on World Rare Disease Day. 🙏✨

I M Possible & Smaart

14 years ago in 2011, Keya's life was written off as IMPOSSIBLE!, owing to her medical diagnosis with a life threatening genetic disorder called Spinal Muscu...

03/03/2025

What did you do this Sunday?

Shopping ?
Movie ?
Eat Out ?
Doesn't matter! I can assure you, that no one can guess what we did !

We (Me and daughters) attended the PARENTS TOWNHALL organized for the first time by 21K School (Online global school headquartered in where both my kids study) in my very own city, .

It was one of my best days and here is why:

✨️For many years of offline schooling, as a working Mom I struggled through hours of traffic snarls, parking hassles, just to send my kids to school. Double that, for Keya, being a wheelchair user.

For the first time in my life, yesterday, our school came to meet us! YES! You heard that right!😇

✨️Earlier while schooling offline, everytime we had to meet the Principal or even Teachers, it would be such a sombre and serious meeting, discussing only how to improve the "Grades" of our "Ward's".

Yesterday we discussed everything from sending our kids for and study cm fun to encouraging in them post schooling hours and what have you.

Trust me when I say, this was unlike any Parent-School interaction I have ever enjoyed before.

Our school is , its and it's .

To me, this mindshift in the mode and kind of education we are seeking for our children is the for both and .

As parents we need to value the and we are investing to educate our children today. Times, Careers and Work Cultures have drastically changed.

Let's ask ourselves this one single most important question...

AS PARENTS HAVE WE EVOLVED ENOUGH TO PREPARE OUR KIDS FOR THEIR FUTURE IN THIS WORLD?

I feel at peace, acknowledging a YES! from my Children, as I feel they are way smarter than we think of them to be.

PLEASE DO SIT DOWN AND SPEAK TO YOUR KIDS TODAY ?

The pictures below speaks volumes !!

Blending with the young learners and leading this joyful path finding journey is Mr Yeshwanthraj Parasmal , Founder and CEO and Aruna Shetty Maam, Head of Schools, from 21K School.

Thank you team 21K for the amazing, fun-filled, full of learning and sharing session yesterday at the Parents Townhall.

Will cherish these moments for days and years to come.

03/03/2025

It was immensely heart-warming for me Mon Ishaa and Keya to attend the 🌍 1st National Conference on Rare Diseases in Children 🌟 organized by BAI JERBAI WADIA HOSPITAL FOR CHILDREN - BJWHC, Mumbai and co-sponsored by Organization for Rare Diseases India on the 📅 1st & 2nd March 2025

The 🎯 Theme for this conference was Cure & Care for the Rare! Raising Awareness and Advancing Solutions

💡This conference covered :
✔ Insightful workshops covering genetics, neonatal care, transplants, and more
✔ Expert panel discussions and case-based learning
✔ Opportunity to connect with leading pediatric experts and support groups
✔ Cultural evening and banquet for networking

Hearing the panelists share their life journeys brought back memories of days gone by and made me realize how we as care givers, after going all around, eventually come to live and adjust our lives to the needs of those we care for. Even if it means, we need to sacrifice whatever we need to and ensure the quality of life of those affected, is the best we can offer.

These journeys of care givers and rare disease warriors, are not just inspiring, but reflect the sheer human grit that is instilled in each of us and what we as humans are capable of when we act with every ounce of will power that we have.

Also throws light on the importance of why affordable health care access is the need of the hour for these brave rare disease affected individuals and their families who are fighting beyond their limits to not just survive but thrive.

Thank you ORDI for this wonderful opportunity to share, learn, grow and be inspired in this tough and long journey.

Here are the glimpses of the moments cherished with other families of rare disease warriors or should I say thrivers and those who make such amazing and meaningful events possible!.

Organization For Rare Diseases India Bai Jerbai Wadia Hospital for Children - BJWHC I M Possible & Smaart

28/02/2025

If there was any podcast video we would keep replaying and listening...it would have to be this one.

Two amazing rare disease warriors enjoying a heart to heart conversation that matters on this World Rare Disease Day.

It's like a dream come true to see self advocates come together and uniting for a cause keeping aside their individual challenges.

This is how new India is going to sound and look. The only legacy we are capable of leaving behind.

No more no less....because ... our new generation needs to feel ... I M Possible & Smaart.

🤞✨️🫡

Meet Keya Hatkar, an extraordinary young advocate, author, and artist who is redefining possibilities! In this episode of 'Beyond Limits Stories,' Keya share...