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War Begins

I did not expect that a casual visit to a local Pediatrician would turn my life upside down.

Hello Dear Readers, If you are here - I am hoping it is for a casual read and not that you're actually affected by DMD, by any means. This page I am just blogging about the beginning of my journey in the war against DMD. And please note that, we are yet to beat it, and are very hopeful that we will do it soon with God's grace.

8th May 2023, was supposed to be a normal day. We were planning to fly back to Bengaluru, Karnataka, India from my home town Sri Ganganagar, Rajasthan, India, after having spent more than 2 weeks. There's a famous senior Pediatrician in our hometown, who is very aged, and is almost retired, and has stopped his practice. But he still helps his old or routine patients. I decided to give him a visit, before going back to Bengaluru, India.

Since January 2023, I had a mild doubt at the back of my mind, that my son, 3 year old now, doesn't jump. But apart from that, he was perfectly healthy. He eats well, goes to school, plays with kids, communicates well and is adorable as a fluffy rabbit. And for this jumping thing, I did express this concern to his routine Pediatricians in Bengaluru, but they ignored it saying he is just delaying jumping, and it's nothing to worry about, and they prescribed him some vitamin D sachets, as his Vit-D levels were slightly low.

Anyways, after a lot of requests to his assistant (as doctor doesn't entertain new patients any more), we were able to meet the doctor. After asking me my concerns, he examined my son, and asked him to stand up from the ground (yes looking for the gowers sign). He turned to us after a few minutes of examining him, and broke the hell upon us. He said, its surprising that no one in Bengaluru, told you about it. Your son is a DMD patient. I knew nothing of DMD, and was expecting him to prescribe some medicine for strength and all. But he turned very serious, and explained the disease and how it progresses. I was shattered!

My wife turned pale. I wasn't able to control my emotions, my anger, my tears. But I was in disbelief. I didn't want to listen to him anymore. He said, there is no cure anywhere in the world, but he can try to control its progression.

My mind wasn't working. I asked my wife to take my son to the playing area outside, and she and my son shouldn't listen to all this for now. In there absence, I realized that I need to be strong, rational and optimistic. I somehow gathered myself together, and asked few doubts. I asked whether some test can validate his diagnosis, he said he is certain, but we can go for CPK test. With a lot of hope, I went ahead for CPK test, which turned out to be just 175 (normal <200 ). I thought may be the doctor was wrong after all.

I immediately went back to him, he saw the reports, and asked me to get the test done later in Bengaluru, and send him the reports. He said he thinks the reports are wrong, he was confident with his diagnosis, and also added that CPK sometimes can be misleading in DMD.

Nevertheless, he did prescribe some medicines, which I am going to talk about in the treatments page in details.

The reader at this point, should know that as of now (17th July 2023), my son is just 3.2 years old, and he is starting up with some treatments. And to reiterate, this page is just documenting the began of my journey. And that this website is purely informational portal, which is intended to help people know about DMD, available options etc. all from my perspective. If something works for my son, I would want everyone suffering from DMD to know about it, and I will try my  best to broadcast.

Coming back. I went back to Bengaluru and immediately started exploring best doctors for DMD, and I came to know that neurologist pediatrician are to be looked for. I booked appointments with few of them, and also repeated CPK, which now turned out to be 18173, I was hopeless. Then there were few more tests, involving DMD-MLPA and all.

Since then, I have met with several doctors, some of them who are expert in the MD field. I am exploring all options available in India/Abroad - Allopathy, Gene therapies, Homeopathy, Oral drugs, Supplements, Yoga, Ayurveda, Indian Alternative medicines, Diet, Nutrition and what not.

I can't describe in words the deep pain that I feel when I am having negative emotions about the future of my son. But then there are days when I am hopeful, when I believe in miracles, in god. But one thing is certain I now am a full believer in sins of past life. In this life, I can't say I was always a good and kind person, but I always wanted and tried to be. Not sure what kind of monster I would have been in my past life which is resulting in the tragedy of this life.

My son, since his birth, is my favorite person. He is so strong, adorable, kind and naughty at the same time that you will fall in love with him if you spend few hours with him. As any parent, I would do anything possible to help him live a healthy, normal and happy life.

This website is to help my fellow unfortunate such parents and patients who are affected by DMD. Please feel free to contribute in any way possible.

I have a very strong belief in God as well as in the researches that are going on, as well as in traditional and alternative medical sciences. I know that either a cure exists, or it will be available soon. And a part of me is thankful that we are living in this era, where science is advancing with leaps and bounds every day and where we are all connected with each other.


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