Iama2cmdindia

23/11/2025

Winter in Delhi is cruel🫤
Pollution is worse 😪
And our little Ishu fights fever, cough, cold on top of LAMA2 CMD

21/11/2025

Learning to walk.
Learning to breathe.
Learning to talk.
And now… learning to raise a voice for LAMA2.

This journey is not just about milestones. It’s about relearning life in ways most families never have to imagine.

✍🏻 It’s about watching other children grow and silently comparing.
✍🏻 It’s about smiling on days when your heart is not ready.
✍🏻 It’s about repeating the same lines in every speech, knowing some people may mock you yet speaking anyway.
✍🏻 It’s about showing up, even when you have no idea what lies ahead.

At the IACC Summit, I spoke not as an expert but as a mother.
A mother fighting for her child. A father too holding everything together, carrying the weight silently, and still saying with full faith everything will be fine one day.

We are ready fighting for every child affected by LAMA2 Congenital Muscular Dystrophy.
And we, asking the nation to look, listen, and act.

If this message touches you, please share it.
Your one click can become one voice.
And one voice can become a movement.

Let’s build LAMA2 awareness.
Let’s build LAMA2 India.
Let’s make the invisible… finally visible.

https://youtu.be/i-Mk2x-0kv4?si=KZTqBXgrfDG5JfVu

At the Indo-American Chamber of Commerce (IACC) Summit, I stood on the stage not as a professional, but as a mother — a mother fighting for every child livin...

02/11/2025

A visit from a Member of Parliament — and an entire hour dedicated only to LAMA2.

Moments like these remind me — this is how change begins…
Hand to hand.
Voice to voice.
Heart to heart.

My impromptu little poem —
May we all come together,
So that one day,
The word “cure” finds its way here. 💫



Moments like these remind me — this is how change begins…
Hand to hand.
Voice to voice.
Heart to heart.

My impromptu little poem —
May we all come together,
So that one day,
The word “cure” finds its way here. 💫

02/11/2025

Our attempt of raising awareness on Lama2 with Member of Parliament 🙏🏻😇

27/09/2025

Shri Keshav Ramlila Committee Pitampura मंच पर हमें के बारे में जागरूकता फैलाने का अवसर मिला।

ये रास्ता आसान नहीं है| हर दिन चुनौतियों से भरा है। पर हमें विश्वास है कि अगर हम लगातार लोगों तक अपनी आवाज़ पहुँचाएँगे, तो एक दिन भारतीय सरकार भी हमें सुनेगी और समाधान की दिशा में ठोस कदम उठाएगी।

🙏 दिल से आभार Ashok Goel Devraha ji और पूरी Keshav ram leela nsp Pitampura team का, जिन्होंने हमें यह मंच दिया और हमारा हौसला बढ़ाया।

यह सिर्फ़ हमारे बच्चों की लड़ाई नहीं है, बल्कि हर उस परिवार की उम्मीद है जो इलाज और बेहतर भविष्य की प्रतीक्षा कर रहा है।

हमारे छोटे से प्रयास एक दिन बड़ी लहर बनेंगे… बस साथ दीजिए, आवाज़ मिलाइए।

23/09/2025

Ahmedabad Diaries – Ishu & Kaka

We came to Ahmedabad for Ishika’s pediatric physiotherapy. It’s been a week her. Therapy after therapy, routine after routine. One day, I casually told Ishu, “Kaka is coming on Saturday.” The moment she heard it, her energy shifted. With the brightest smile, she said, “Meri Kaka aane wali hai.” and it was on repeat 🥰

And Saturday morning truly was a scene to watch. The moment Kaka (Misha) arrived, Ishu lit up. They were inseparable; Misha had to be around her every second.

I never imagined their bond would be this strong until I saw Ishu cry “Kaka, Kaka” nonstop after Misha and Raghav flew back to Delhi on Monday evening. She cried herself to sleep that night.

That’s when I realized a few things:

1. Misha had prayed for a baby sister my entire pregnancy. Maybe their bond began at the soul level even before Ishu came into this world.

2. They fight, tease, and laugh like any normal siblings, and it fills our heart.

3. Ishu may lack muscle strength, but she has the sharpness to make Misha melt for her and Misha, my mature and understanding child, always let Ishu win.

Moral: Sometimes, strength isn’t in muscles but in love, patience, and the unspoken connection that we share.

I am grateful for the support i get from my whole family. Let’s always count the blessings 😍💫🧿

19/09/2025

This image may look hazy to many but for those living with neuromuscular disease, it tells a different story. As caregivers, we see it with wide open eyes because even a minute or two of such moments (Ishika on her feet) feels like a beautiful vision to us. Water becomes the friend of our children.

Behind every smile lies unseen pain,
Each small step is a hard-earned gain.
The world may not see the battles we fight,
But our hope keeps burning, ever so bright.

Dear world,

We understand you may not have the cure yet, but you can help us find and connect with others living with LAMA2-CMD. Together, we will grow our LAMA2 family and strengthen our voice for hope and change.

21/08/2025

05/08/2025

We protect diamonds because they’re rare but what about the rarest among us?

This is Ishika, born with Lama2 CMD, a condition so rare, most have never heard of it.

Let’s not let her or similar children like her fight alone.

🔁 Share. 💬 Talk. ❤️ Care