Boy with SMA Type 2 is running, standing , sitting, lifting alone under Spinraza

This is a miracle 💓 Boy with SMA Type 2 is running, standing and sitting, lifting alone. This is only possible with early treatment from birth with Spinraza. This is the new face from spinal muscular atrophy (SMA) 💪 #AdgangTilSpinrazaForAlle #AccessToSpinraza

Typical brothers playing. But can you believe one of them has SMA? Gabriel Peters was given the first FDA approved SMA treatment, Spinraza, while it was still in clinical trial three years ago. And this, friends, is a miracle. He is a miracle. The Peters family know this firsthand as their older daughter has SMA Type 2. Typically, the severity (or the type) is similar between siblings. But, with a treatment from birth, doctors now say Gabriel genetically has SMA but is asymptomatic — no type at all. Running, standing, lifting and throwing toys… all things not usually possible with this disease. This is SMA. The new SMA. And it is astounding! NEVER GIVE UP. #thisissma #miraclesdohappen #withalotofwork

Gepostet von Gwendolyn Strong Foundation am Mittwoch, 23. Mai 2018

Spinraza -kampen fortsetter i Norge

Lise Lehrmann. Jurist, mor og representant for pårørendegruppen STOPP SMA skrev et Debatinnlegg under tittelen «Avklaring om pasientrettigheter» gir Ole Frithjof Norheim uttrykk for at det etter Bent Høies debattilsvar; «Underlige feilslutninger», nå er «klart at domstolene ikke har et rettslig grunnlag for å overprøve innholdet i helsetjenestens prioriteringer». Dette er åpenbart en ny feilslutning.
Spinraza i Norge