[todd]

It is a difficult decision to have to be faced with.  My son has SMA II.  He was set to receive Spinraza on a friday morning, his first dose, back in August of this year, and the Doctor had to cancel the procedure due to a personal issue.  He was brought into the STRONG study that very same day.  Strange how things occur in this world.  However, friends of ours, have a child with SMA I whom has been on Spinraza since the clinical trial began, he is now 5, and I witnessed him stand from his wheel chair, and walk to me, just this very past weekend, so I know Spinraza works, and your child needs it badly.

Had AVXS-101 not been available for my son in the STRONG study, then I would have never thought second about dosing him with Spinraza.  Tough choice.  Just know that AVXS-101 is only available for type II’s in the clinical trial phase.  It is a ways out before being available for anyone other than those worse off.  YMMV.

Todd