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Real members of mySMAteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Hi My baby 11 months old and having type 1 SMA. I need guidance from someone who is already dealing with it about treatment.

A mySMAteam Member asked a question 💭
PUNE,India
June 18
 · 
Be the first to react
A mySMAteam Member

My baby girl started at 2 weeks old on risdipalm for one month then we went ahead and got the infusion which took like 90 minutes and she is done no medicine just check ups at the hospital. The infusion cost over a million dollars here are fundings for that you would have to speak with your hospital's team of doctors I deal with SAM 1

July 17
A mySMAteam Member

Great to hear your. I would like to know more about the treatment got for her.

I have started risdipalm for my daughter at 11 month and thinking about zolgesma but looking at the cost it will take 3,4 month to raise the funds with crowdfunding.

Can you please share more about treatments you have got for ber

July 15
A mySMAteam Member

It's very overwhelming and yes the treatment today is remarkable.My daughter was diagnosed with SMA 1 she was treated at 2 weeks old and she's just turn 1 years old on July 4th 2026 and she's doing great it's like she doesn't have SMA 1 she right where a child should be without this disease.I am so thankful for the the team at chop hospital for helping my baby girl live a normal life. God bless you and your child I hope everything works out for you Sincerely

July 15
mySMAteam

First of all, navigating this journey with an 11-month-old is incredibly hard, and it's completely okay to feel overwhelmed. Many mySMAteam members have been exactly where you are right now, and there is real hope — especially with the treatments available today.

A mySMAteam member shared: "Fight, push, change hospitals Show Full Answer

First of all, navigating this journey with an 11-month-old is incredibly hard, and it's completely okay to feel overwhelmed. Many mySMAteam members have been exactly where you are right now, and there is real hope — especially with the treatments available today.

A mySMAteam member shared: "Fight, push, change hospitals and doctors if needed. Travel to SMA specialty centers and get treatment as soon as you can. Getting treatments as soon as possible is critical for the most benefit."

That advice really captures what many families have learned firsthand. There are currently three FDA-approved treatments for SMA type 1:

- Zolgensma (onasemnogene abeparvovec) — A one-time gene therapy, typically given to children under 2 years old. Early research shows dramatic improvements in motor function when given early.
- Spinraza (nusinersen) — Given by injection, it can be started as early as 3 days old.
- Evrysdi (risdiplam) — An oral liquid given at home, approved for children as young as 2 months old.

Some children have received more than one of these treatments in combination, which doctors are actively studying. Beyond medication, a care team typically includes several specialists who can make a big difference:

- Pulmonologist — For breathing support, which is especially important in type 1 SMA
- Nutritionist/feeding specialist — Swallowing difficulties are common, and feeding tubes (G-tubes or NG tubes) are an option
- Physical and occupational therapists — To help your baby develop and maintain motor skills
- Mental health support — For the whole family, not just your baby

Speaking with your baby's neurologist or an SMA specialty center as soon as possible is strongly recommended to discuss which treatment is the best fit.

June 18

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