Ryu & Miyu’s SMA Journey

Ryu & Miyu’s SMA Journey Welcome to our SMA Journey!
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I am Ri-yu りゅ Type 1 (5yrs old) Late Treated - Risdiplam & Miyu みゆ Type 1 (2yr old) Early Treated - Zolgensma (Philippians 4:13 I can do all things through Christ which strengtheneth me.)

Ryu & Miyu’s SMA Journey From Treatments to Complete Healing Journey 💯❤️ soon... 🏞🌄 Thank you Toyota of Hollywood ...
25/09/2026

Ryu & Miyu’s SMA Journey From Treatments to Complete Healing Journey 💯❤️ soon... 🏞🌄

Thank you Toyota of Hollywood 🎥 esp. Stephen Allison & Braeden Morgan

Join us next week for a community webinar with Scholar Rock on the recent FDA approval of ISEMBYLD™(apitegromab-mstn)!IS...
23/09/2026

Join us next week for a community webinar with Scholar Rock on the recent FDA approval of ISEMBYLD™(apitegromab-mstn)!

ISEMBYLD™ is approved to treat spinal muscular atrophy (SMA) in adults and children 2 years of age and older who are currently receiving an SMN2-targeted treatment.

We’ll talk about what this approval means for individuals and families in the SMA community, including treatment access, next steps, and key insights. A live Q&A will follow, based on questions submitted in advance.

Date: Wednesday, September 30
Time: 11:00 am CT / 12:00 pm ET

Register using the link below:

https://us02web.zoom.us/webinar/register/WN_yxkS2YG-TT-cZ92FarZXdg #/registration

Ryu & Miyu’s SMA Journey in Cure SMA Community newsletter ❤️🤩😍🥰😘
23/09/2026

Ryu & Miyu’s SMA Journey in Cure SMA Community newsletter ❤️🤩😍🥰😘

Did you know Ryu & Miyu’s vitals are in healthy range especially BMI Weight, usually have a very low weight, and its v...
21/09/2026

Did you know Ryu & Miyu’s vitals are in healthy range especially BMI Weight, usually have a very low weight, and its very hard to maintain healthy skeletal muscle mass, due to SMA low SMN proteins, New Muscle Treatment for SMA helps SMA body to maintain skeletal muscle mass and prevent .

Miyu, SMA Type 1, Age 2, Early Treated , As of 9/19 Vitals

A weight of 12.3 kg (about 27.1 lbs) for a 2-year-old girl is completely healthy and normal, sitting right around the 70th to 75th percentile on standard World Health Organization (WHO) growth charts.

Ryu, SMA Type 1, Age 5, Late Treated , As of 9/19 Vitals,

A weight of 17.4 kg (38.4 lbs) for a 5-year-old boy falls within a normal, healthy range, typically sitting around the lower-to-middle percentiles on standard growth charts.

Understanding the Numbers

Normal Range: For 5-year-old boys, a typical weight range spans roughly from 14.1 kg to 24.2 kg.

The 17.4 kg Mark: This is very close to the average weight for a slightly younger child (around 4.5 years old), but every child grows at their own unique pace.

Growth Trajectory: A single measurement matters less than a steady, consistent upward trend along your child's personal growth curve.

A blood pressure reading of 93/53 mm Hg for a 5-year-old boy typically falls within a normal, healthy range.

At Playground Slide, Sliding is fun after (a series of) appointment ❤️
19/09/2026

At Playground Slide, Sliding is fun after (a series of) appointment ❤️

Ryu and Miyu's Personal or Vein Finder A personal vein scanner (or ) uses near-infrared light to map blood vessels b...
19/09/2026

Ryu and Miyu's Personal or Vein Finder

A personal vein scanner (or ) uses near-infrared light to map blood vessels beneath the skin, helping individuals with Spinal Muscular Atrophy (SMA) and their caregivers minimize the pain and difficulty of intravenous (IV) procedures or routine blood draws.

Key Benefits for SMA

Fewer Needle Sticks: Muscle wasting and reduced mobility in SMA can make veins hard to find, leading to multiple failed insertion attempts; vein scanners locate vessels accurately on the first try.

Less Discomfort and Anxiety: Real-time visualization reduces physical pain and procedural stress for patients who already undergo frequent medical visits.

Efficient Care Management: Streamlines blood collection and intravenous access—such as for specific infusion therapies or hydration—saving time in clinical or home settings.

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