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SMA Angels

There is no tragedy in life

Like the death of a child.

We, all members in CureSMA India, pay our tribute to all the children and adults who left us to the heavenly abode leaving an everlasting impression on lives of many.

They have all taught us meaningful lessons in lives and have given us a very big purpose which we all must take forward till we achieve our final goal.

We commit ourselves to put in our best efforts & energy to fight this battle of access & affordability to bring SMA treatment & cure to India.

We pay tribute to our Dear Baby Saanvi whom we have lost recently on 26th June, 2019 to this draconian disease.

She fought bravely till the end despite all the pain.

Rest in peace Dear Saanvi. You will continue to inspire all of us always.

Anabia(22th Feb. 2019 to 22th Oct. 2019)

Niralya .(11th Sept. 2018 to 11th Sept. 2019)

Yojith Garigipati(4th Jan. 2019 to 26th Aug. 2019)

Samin Sunny .(10th Feb 1992 to 13th Aug 2019)

Veer Pareek(3rd Feb. 2019 to 12th Aug. 2019 )

Sanjeev .(18th Jan 2019 to 11th Aug 2019)

Zeenat Ara.(18th April 1987 to 21st July 2019)

S. Mohammed Kashif(23th september 2014 to 19th July 2019)

ATHARV(21th Sep. 2012 to 6th July 2019)

Saanvi(11th January 2019 to 26th June 2019)

Santwana Aras (1985 to 3rd June 2019)

Baby Of Rachana(9th Dec. 2017 to 20th March 2019)

Mehansh(21th Nov. 2018 to 17th Dec. 2018)

Rest In Peace Our SMA Angels

Mother who lost her child

A humble request to all –
I, Jerin, would like to share my journey as a parent whose child had SMA Type 1, who after 6 wonderful months with us went to his heavenly abode. I am sharing my experience to help other parents who are in a similar situation that I was in a few months back.

The fact that my child, Hanoch, had this disease came out of the blue to all of us because the whole of my pregnancy had gone smoothly. We underwent all the tests like blood test, trisomy, monthly ultrasound, and all of these showed a healthy baby growing in me. So that was what we were expecting when my baby was born. Even at the time of birth, he was completely fine. He cried normally and moved his limbs properly.
However, things started going downhill after 20 days or so when his movements started lessening day by day.
Being first time parents, this hit us hard. And had it been not for the fact that I was with my parents throughout the whole process, I don’t think I could have handled it the way I did. It’s my parents and in-laws who first noticed the symptoms. The floppiness in his movements or the visible lack of it.

Also, I had a really good pediatrician who also noticed the symptoms very early on and asked me to consult a neuro-pediatric. So only after consulting the latter and after getting the blood tests done did we find out that our baby had SMA Type 1. This was a disease that none of us had any clue about. When I first got the report, I just thought that it was just a minor muscle related issue which he would grow out of as the months progressed. It’s my doctor who told me of the seriousness and the fatal nature of this disease. My doctor told me that my baby won’t live to complete 1 year.
To say that we were devastated is an understatement. We had countless sleepless nights over this. After knowing of the nature of this disease, we had given up almost all hope. However, a glimmer of hope came in the form of physiotherapy. This really helped him. Even during the lockdown, when other parents found it hard to get physiotherapy sessions, we made sure that he regularly got his physiotherapy done and we were able to get it because we had a really good physiotherapist in our building. Physiotherapy really did wonders for my baby as he started getting back the movements in his limbs especially in his hands. Seeing these improvements really gave us hopes and we continued with regular physiotherapy sessions.
As we were going on with these sessions, I got to know that Amrita Hospital got the requisite approval for the medicine ZolgenSMA which is a one-time gene therapy. This is after a month he was diagnosed. This gave us stronger hopes because finally, there was a medicine that could make him better. So, we got all the paperwork done for this particular medicine in a month and was waiting to get selected.
In the meantime, my baby got selected for the Risdiplam medicine which we had applied for alongside. We got all the paperwork done for this as well. Here, I want to mention the efficiency and helpful nature of the DM office of Ernakulam. Once they heard of our situation, they dealt with us with kindness and empathy. It was only because of their prompt working that I could get all the certificates without any delay, even during the lockdown.

However, even after getting all the paperwork in place, my baby couldn’t avail of the medicine soon enough to help him. The day after I mailed all the documents to the medicine company, my baby collapsed. He was admitted to the hospital and had to be put on ventilator support after 4 days. However, even the ventilator couldn’t help him, and I lost my baby.
Even though my baby passed away, I did everything in my power to save my baby and I got the requisite help at the appropriate time. I hope all of you get the help and the treatment your baby needs. And I request you to do all the tests which detect any disorder in the embryo so that one can be prepared financially and mentally.