Looking for honest feedback on stem cells for Spinal Muscular Atrophy
Good day. My son is 5, SMA type 2. He’s been on risdiplam for 2 years — can sit independently now and pulls to stand, but still no walking. Local specialists say this is probably the ceiling. I’ve come across information about stem cell treatment in clinics outside Europe/Ukraine that claim to improve muscle strength in SMA kids even after SMN-targeted drugs. Has anyone dealt with this personally or knows reliable patient stories?
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I followed several families who tried it. For type 2 kids already on risdiplam or Spinraza, the main reported benefits are better endurance, less scoliosis progression, and sometimes small gains in Hammersmith scores. It’s not a replacement for approved meds, more like an extra layer of support for motor neurons and muscles. Success really depends on the child’s baseline and the clinic’s protocol (number of infusions, cell quality, rehab after).
This particular review seemed quite straightforward and not overhyped https://stemplus.clinic/disease-treatment/sma/ - it shows monthly changes for a 4–6-year-old child, including the slow periods. Helped me a lot when we were weighing options. Definitely get an opinion from an SMA-experienced neurologist before considering travel and costs.