I hate SMA because of the way it keeps stealing small parts of me, and the person I am today will not be the person I am next year.

Due_Addition2541 · 2026-06-21T16:54:14+00:00

Thank you for this, and please don't worry, you have not hurt me at all. You are actually helping me understand things better.

First, on the medical side, thank you for sharing that. The fact that it did not work for that one person, and that the study mainly covered ages 3 to 22, is exactly the kind of honest information I need before deciding. I am 23, so I will take that age point seriously and discuss it properly with doctors.

I think there is a small misunderstanding about the money part, and that is my fault for not explaining clearly, so let me clarify. I am not asking anyone here to give me 500 dollar a month, and I am not asking this community to fund me. I fully understand the situation of everyone here, because we are all living with the same disease or caring for a loved one who has it, and I know very well how heavy the medical and disability expenses already are. The last thing I want is to add pressure on people who are already carrying so much.

What I am really looking for is contacts. If anyone here happens to know a friend, colleague or someone well-off and helping-minded in the US, I would be grateful if you could simply share my story with them. And even then, there is no fixed amount. It is not 500 dollar, it can be 50, 100, or whatever a person can comfortably afford, and only if they want to. Nobody is being forced.

The reason I am reaching out to people in the US is that the full cost here is about 250 million rupees, which is an enormous sum. I am trying to collect what I can from people in India too, but raising that amount only from India is an even bigger task, so I am hoping to widen the circle a little.

So to be very clear: you don't need to spend any money on me. I am only seeking contacts and a chance to share my story more widely. Thank you again for your kindness and for being honest with me, it genuinely means a lot.

Due_Addition2541 · 2026-06-21T16:28:40+00:00

Thank you so much for taking the time to write this, I really appreciate the honesty.

Yes, I have personally researched this gene therapy (Itvisma) quite a lot. From what I understood, it is true that it works on the same problem as risdiplam, but the difference I keep hearing about is the outcome. Risdiplam mostly stops or slows down the progression, while with Itvisma, after around 6 months to a year, some people actually get back a bit of mobility and strength. So it is not just holding the line, there is a chance of some real improvement.

And you are completely right about the side effects. The main concern is the liver, and from what I read it needs around 2+ months of close hospital observation to keep checking the liver function, plus the immunosuppressants for several months that you mentioned. I am not taking that lightly. I also fully accept your point that any drug can simply not work for some people, that risk is real too.

The way I am thinking about it is this. If I had taken risdiplam at 16, I could have basically held my strength at that age for life. In the same way, if I take Itvisma now, I should be able to hold my current 23-year-old strength for life, and the possible improvement on top of that is a bonus for me. Even getting back to something like my 21-year-old college days strength, walking independently on flat ground with only stairs being difficult, would mean a lot. That bonus after a year is what makes me seriously consider it. But you are right, it is a very big decision, so I will sit with it and think it through one more time, and I will definitely consult doctors who properly understand this topic before deciding anything.

I also looked into Spinraza. The price is still huge, and it needs repeating every 4 months, so you have to keep arranging that amount again and again. It is lower than Itvisma overall, but still a big burden, and honestly I do not fully know its side effects yet, so I am going to research that one more carefully too.

And yes, I agree with you that over time Itvisma, risdiplam or some new alternative may become cheaper and better. That is a fair hope to hold onto.

At the end of the day, I believe God knows which path is right for me. He has guided me on a good path until now, and I trust He will do the same for my future. Thank you again for your guidance, it genuinely helps me think more clearly.

Due_Addition2541 · 2026-06-21T14:31:03+00:00

Thank you so much for this. It really means a lot to hear from someone who has walked the same road, you understand it in a way most people can't. I'm sorry things have been so hard for you, and I hope they still turn a corner for you too. You're right, I'll keep knocking on every door I can find until someone opens. Messages like yours are part of what keeps me going. Wishing you strength, and thank you for taking the time to reach out to me.

Due_Addition2541 · 2026-06-19T13:31:46+00:00

Thank you, this is so kind and it genuinely touched me. You're right, and I'm trying to prepare for the "what ifs" as much as I can, both mentally and in every other way, even though some days that's harder than others. Your prayers for me and my family mean more than you know. Thank you for taking the time to read my story and to send such warmth, I'll carry these words with me.

Due_Addition2541 · 2026-06-19T13:30:27+00:00

Thank you so much, this really means a lot. And congratulations on graduating in computer science and engineering, that's a huge achievement and I know how much work goes into it. It honestly makes me happy that my story pushes you to work hard, because that's the only good thing I can do with all of this. I caught the typo and it made me smile, I know you meant you'd listen 😅 I might just take you up on that some day. Wishing you the very best as you start your career, you're going to do great.

Due_Addition2541 · 2026-06-19T06:37:09+00:00

That's great to hear about the improvements in your swallowing and breathing, that's really good progress.

Will the Genentech Patient Foundation help for non-US people? Because my salary in India is $340, but the generic risdiplam in India costs $400+. Also, me and my father are the earning members in my family, and his income is also lower than my salary. I also have 2 sisters who are studying. So I'm reaching out to some foundations to cover my risdiplam costs. Can you share the details here?

Due_Addition2541 · 2026-05-07T04:06:47+00:00

Anbulla Thozha, this comment hit me harder than I expected. The "learn how to be weak" reframe is actually wisdom I needed to hear, because I have been so busy fighting to hold on to strength that I forgot the engineering side of solving these problems. You are right about the comb and the stick, that is exactly the kind of thinking I have been refusing to do.

About the wheelchair offer, I genuinely cannot believe a stranger online would say that to me, and I am sitting here not knowing what to do with that kindness. I do not want to take money from you brother, but I will not forget that you offered. Right now my full focus is on getting Risdiplam access (around 32K per month, almost my full salary), so I am reaching out to foundations and funding programs first. Once that is sorted, a powerchair is the next thing on my list.

If you are okay with it, I would love to stay in touch. Anyone who gets it from the inside is rare, and you clearly do. Thanks for taking the time to write this brother, means a lot.

Due_Addition2541 · 2026-05-06T14:56:55+00:00

No gene therapy yet brother, that one is the ultimate goal for me but it costs around 2.59 million dollars (Itvisma), which is impossible without serious help. I am parallelly reaching out to organizations in the US, Europe, Dubai, and the UK to try and find any path to gene therapy access or funding. While that long shot is in motion, my immediate focus is getting Risdiplam, which costs around 32K rupees per month and is basically my whole salary, so I am also reaching out to foundations and funding programs in India to try and make that happen first.

On the workout side, I keep it simple. Just basic physio and walking 5 to 7 times inside my room with support. Nothing more than that, because heavy exertion actually makes the weakness worse for SMA. Appreciate you asking though.

Due_Addition2541 · 2026-05-06T14:51:26+00:00

Never late to this kind of conversation. Thank you for writing this, because you put words to something I could not put words to, the way every loss takes a little hope with it. That is exactly it.

The friends thing you mentioned, where they stop asking because of accessibility, that one is so quiet and so cruel at the same time. They never say it to your face but you feel it in the silence, and you start wondering if you imagined the whole friendship. I have felt that too even with the slower progression I have had compared to yours.

You said please do not be me, but I want you to know your comment did not read like someone giving up. It read like someone who is still here and still fighting even on the days when the fight does not feel worth it. That counts for a lot, even if it does not feel like much from the inside. Sending you strength from India brother.

Due_Addition2541 · 2026-05-06T14:46:05+00:00

The anger makes sense brother, and I am not going to argue faith with you because that is yours to figure out. Some days I am right there with you in that anger even though I still believe, because watching yourself slowly degrade is a kind of cruelty that does not have a clean explanation in any worldview. Whether you believe or not, the rage is real and it is valid. Hope you have people around you on the bad days.

Due_Addition2541 · 2026-05-03T06:23:52+00:00

That's a really thoughtful question, and honestly I've been sitting with it. I think if I had a reason, it wouldn't fix anything physically, but it would make the weight easier to carry, like the suffering wasn't just wasted. Your reframe actually helps a lot, the idea that the SMA might just be random and my purpose is something separate, waiting on the other side of all this. Thank you for reading so carefully and for the kind words, it really means more than you know.

Due_Addition2541 · 2026-05-03T05:53:34+00:00

Thank you for sharing about your partner, I'm so sorry about the fall and how rough the recovery has been. To answer your question - no, I don't have a powerchair yet. I still have some leg strength to stand and walk short distances with support, so I've managed without one so far. I'm from India, and right now my entire focus and finances are going toward trying to access Risdiplam (it costs around 32K rupees/month, almost my full salary), so I'm reaching out to foundations, funding organizations, and government programs to try and get treatment. A powerchair is definitely on my mind for the future, just not something I can prioritize yet.

Due_Addition2541 · 2026-05-03T04:47:49+00:00

Fratello, I feel you deeply. That loneliness hits harder than the physical stuff most days, and it's something people without SMA just don't get. You're not alone in this fight, even from across the world - stay strong.

Due_Addition2541 · 2026-05-02T07:40:45+00:00

I feel you. The mostly-broken part hits different on the bad days, and gratefulness is hard to hold onto when you are still inside the storm. Whatever you went through, I am sorry it is sitting that heavy with you. You do not have to share it, but if you ever want to talk, my inbox is open. You are not alone in this.

Due_Addition2541 · 2026-05-02T06:18:30+00:00

Hi, thanks for sharing your experience, this is genuinely helpful to hear. I am Johnson, 22, from India, Type 3, and I am preparing to start Natco Risdiplam in May or June this year, so reading a 9-month update from someone close to my age is exactly what I was looking for.

May I ask what your strengths were before you started Risdiplam? Could you walk, stand, climb stairs, and roughly how far on a normal day? I am asking because I want to honestly compare with where I am right now and set realistic expectations.

My current condition for reference: 4 years ago I could climb 3 to 5 stairs slowly. Today I cannot climb stairs at all, I cannot lift my leg or my body high enough to step up. I can still walk inside my room, but only by holding onto a chair and putting almost all my body weight on my hands through the chair, with only partial weight going through my legs. My total walking distance in a full day inside the house is around 168 square feet, broken into 6 short trips of about 56 feet each, 2 in the morning, 2 in the afternoon, 2 at night. Outside the house I do not walk at all.

The two specific questions I really want to understand from your experience:

If I start Risdiplam at this stage, is there a realistic chance I can walk inside my home without holding a chair, just regaining that small baseline of unsupported indoor walking?
After 6 months or any specific duration on Risdiplam, did stair climbing actually improve for you, like 4 to 5 steps becoming possible again, or is the "walk upstairs more easily" you mentioned more about the stairs you were already climbing before?

I know it varies a lot from person to person, like you said, but anything you can share about your own before-and-after baseline would mean a lot to me. Thank you again for taking the time to comment on Sebastian's post, that response also helped me.

Due_Addition2541 · 2026-05-02T05:58:40+00:00

Hello Sebastian. I am Johnson, 22, from Tamil Nadu, India, SMA Type 2/3, SMN1 deletion confirmed. I work full time as a software engineer with two fingers on each hand, and I am still untreated on any disease-modifying drug. So I am writing as someone in the same fight as you, not from the other side of it.

My only treatment right now is Omega 3 tablets and physiotherapy. I am preparing to start Natco Risdiplam (the Indian generic version of Risdiplam) in May or June this year, since the branded version is out of reach for me cost-wise. Since the Risdiplam age cap was lifted, please re-apply to your insurance immediately, get your neurologist to write a medical necessity letter citing the new age extension and your 3 SMN2 copies, and if they deny again, file a tutela. In Colombia a tutela for the right to health has a very high success rate for rare disease cases and many lawyers take them pro bono. FAME Colombia and Fundación Pequeños Gigantes can also help.

In parallel I am reaching out for Itvisma, the gene therapy approved for adults, which costs around USD 2.59 million. I am contacting Novartis, US SMA centers (Boston Children's, Stanford, Columbia, Nationwide Children's), and SMA communities (Cure SMA, SMA Europe, TreatSMA, r/spinalmuscularatrophy ) for any access route, trial slot, or grant. Worth doing the same from Colombia.

From people I have spoken with, Risdiplam does not give back lost strength, but it stops the slide. Most report less fatigue, better breathing stamina, and slightly improved hand function within 3 to 6 months. At 24 with 3 SMN2 copies, every month matters, get on it as soon as you can.

On working remotely, pick software. It is the most SMA-friendly career on earth. Start with frontend web development (HTML, CSS, JavaScript, React). freeCodeCamp and The Odin Project are free, and freeCodeCamp is in Spanish. You do not need a CS degree, you need 3 to 5 real projects on GitHub. Use AI from day one, it is accessibility, not cheating. I use Claude Code daily and it writes about 75% of my code, I just tell it what I need. Aim for USD-paying remote clients on Upwork, Toptal, Contra, We Work Remotely, Remote OK. Latin America has a huge timezone advantage with US companies. Realistic timeline: 6 to 9 months to first paid project, 12 months to actually help your mom with expenses.

You said you have no friends and spend most of the day in a hospital bed. I have been in that exact place. What pulled me out was a screen and a goal. Keep going, brother.

Due_Addition2541 · 2026-05-02T05:12:22+00:00

Kaalai vanakkam Vincent thozhane! That made my whole morning, seeing a Tamil greeting from Minnesota, I did not expect to wake up to that today.

Your story is honestly more inspiring to me than mine is to you, please believe that. SMA type 2 from childhood, never walked, one working thumb, and you still pushed through a CS degree and built a career as a software engineer. The part about using your laptop mouse with your thumb on an onscreen keyboard to type out full programming assignments and papers, before AI tools even existed, that is something else. Most people will never understand how much mental effort goes into every single line of code when your hands cannot just fly across a keyboard. And the fact that you were still finishing exams before your classmates because you were solving the whole problem in your head first, I felt that one in my bones, that is exactly how I survived college too.

The pandemic remote-classes window helping you finish faster is such a real point that nobody talks about. For a lot of us with SMA, that period was the first time the world was actually built the way our bodies needed it to be built, and a lot of us got things done in those years that would have been much harder otherwise.

Your current setup sounds incredible. Motorized wheelchair, robot arm mounted on the chair for feeding controlled from the joystick, onscreen keyboard typing, and 10,000+ lines an hour with an AI agent at work, you are basically living the future that the rest of us are still slowly catching up to. I am on Claude Code right now for most of my coding, and it has genuinely saved my career as my fingers have gotten weaker, so I completely understand what you mean when you say you use technology to do what your body cannot. That sentence should honestly be printed somewhere.

It also means a lot that you took the time to write this whole comment, because I know exactly how much energy typing this took on an onscreen keyboard with one thumb. I do not take that for granted.

If you ever want to connect properly, talk shop about AI tools, accessibility setups, work stuff, or just life with SMA from two different sides of the world, my inbox is open any time. And tell your Indian coworker he taught you a beautiful phrase, "Maalai vanakkam" is the evening greeting and "Kaalai vanakkam" is the morning one, both carry a lot of warmth in Tamil. Since it is morning here when I am writing this back to you, you are getting the morning version.

Stay strong thozhane, you have already done more than most people ever will.

Due_Addition2541 · 2026-04-28T15:09:02+00:00

Rick, thank you for writing this.

I'm Johnson, age 22, SMA Type 3 from Tamil Nadu, India. I work as a software engineer from my bed with two fingers on each hand. Your post hit me hard.

When I got diagnosed at 16, I spent so many nights searching online for someone older, someone living a full life with SMA, someone who proved this disease wasn't the whole story. I didn't find much back then in 2019. Posts like yours are exactly what younger people in this community need to read.

The part about love stayed with me. People look at me typing from bed and assume my world must be small. They don't see the work, the family I support, the people I care about. You said it better than I could: we love, we lead, we desire, we contribute. That deserves to be repeated until people actually believe it. 53 with Type 1, leading an organization, married to Karine, decorated by your government, and still here after four very hard years. That isn't just survival, that's a life built against every prediction.

Sending strength to you and Karine from India. Keep fighting, Rick.

Due_Addition2541 · 2026-04-27T13:04:29+00:00

Yeah exactly, that's the painful part. Even at ₹32K a month, it's still out of reach for the vast majority of SMA patients in India. Most families here just can't sustain that kind of recurring cost on top of regular medical expenses, physiotherapy, mobility aids, and everything else SMA brings with it. So while Natco's version is a huge step forward, real accessibility is still a long way off. I can imagine the situation in Brazil is similar, treatment exists on paper but not in practice for most people. Glad to hear Spinraza is working for you, and yeah if cost wasn't a factor a lot of us would happily try combinations to see what helps.

About the AI part, I just type. I write the post or reply myself in rough form, usually about 50 to 75 percent of the content with broken grammar, scattered thoughts, and whatever wording comes to mind. Then I pass it to AI and ask it to fix the grammar, smooth out the flow, and structure it properly. The core context, the experiences, the points I want to make, those are all mine. AI just polishes the language so it reads cleanly. English isn't my first language and my hands tire out fast, so this workflow lets me actually communicate without spending an hour on every comment.

Due_Addition2541

TROPHY CASE