Spinraza Loading Dose #1 – DONE!

Mark and Erin’s health insurance carrier, Aetna, hadn’t yet approved Spinraza in time for Emma’s treatment today. So Biogen, Inc., the manufacturer of Spinraza, donated the first dose and overnighted it to Seattle Children’s Hospital in time for Emma’s treatment today.

Mark and I actually considered whipping up a batch of Spinraza ourselves since they put the recipe right on the side of the box.

We decided against it… you know… patents, and all.

After Emma was checked in and prepped Dr. Natarajan and NP Alexis Russell took Emma into the OR and performed a lumbar puncture to administer the 5 ml dose. Nurse Russell hit the spot on the very first poke (which is a rarity for babies and first dosages). They delivered the first loading dose of Spinraza intrathecally (injecting it directly into Emma’s cerebral spinal fluid).

Emma will have her next loading dose in 14 days (Nov 14); a third one in another 14 days (Nov 28) and her final loading dose 30 days after that, on Dec 28.  After that she’ll get maintenance doses every 3 months.

There was a bit of a mix-up in notifying Mark and Erin that Emma was waiting for them in post-op, but other than that things were went very smoothly. It wasn’t long before mother and child were re-united. Day ONE on Spinraza.

There was only one, slight side effect from today’s activities…..

Emma became a cute pink flamingo… just in time for Hallowe’en.

Thanks to all of you following this for your prayers, kind thoughts and unbelievable support of Mark, Erin, Emma and the family.