We’re finally here! Our journey has lasted over three and half years, and we’ve overcome so many huge obstacles. We have a date & a tentative plan for Benny's surgery!
Benny & Josh
We’re finally here! Our journey has lasted over three and half years, and we’ve overcome so many huge obstacles. We have a date & a tentative plan for Benny's surgery!
When we got the FDA’s approval at the end of December, we thought it would be smooth sailing from there. We knew we still needed the board at Dayton Children’s hospital to give the official approval, but we were told that was mere procedure.
It turns out there were some legal issues to be resolved, but we got the approval from the Internal Review Board last week.
Our excitement however, was tempered, as we learned that getting the "GMP" (good manufacturing practice) pharmaceutical grade medication from the facility in Spain (that produced the drug) over to the hospital in Dayton, Ohio would be delayed. We needed special permits to have it shipped and it would take time to get the permits. Without the medication in place we couldn’t schedule a date for the procedure.
We didn't know how long the delay would last, so while we remained optimistic, it was clear to us that we had one more heart wrenching drop on our roller coaster ride.
Fortunately this setback was a minor one. We received the news this past Friday morning that the transport for the drug was given clearance and it would ship out of Spain on Monday, March 15th - coincidentally our six year wedding anniversary :).
Jennie & I wonder if we're connected from a previous life as it often seems to us that we are "an old married couple". And the six years we've been married sometimes feels like 60 years.
Here is how things will hopefully proceed from here...
On March 31 or Apr 1 we will be packing up the family (and some amazing helpers) to head to Dayton, Ohio. Not what one thinks of when planning a Passover vacation, but obviously we're ecstatic.
On April 5th, Benny will begin his presurgical appointments, and if all goes well, Benny's experimental brain surgery will take place on either Thursday April 8th or Friday April 9th.
We have been told to expect at least one week of post-op time in the Pediatric Intensive Care Unit following the procedure. So hopefully we’ll be heading back home to Brooklyn the week of April 19th.
There will be a follow up MRI for Benny about one month after the procedure and if all looks good the next procedure (we hope of course for Josh) will take place about 2 months after Benny’s.
We know our journey has reached an unbelievably incredible milestone. We also know that we have a long road ahead. We expect extensive therapy following the procedures. And the reality is, we have no idea what to expect.
Please continue to have Benny and Josh in your prayers.
Thank you so much for being a part of #SaveBennyAndJosh. Wishing you a Happy Passover &/or Easter.
We are grateful for your friendship and send big hugs.
Jennie & Gary, Mikey, Benny, Josh, Evan & baby Racheli.
The boys and their Hebrew names as follows:
Shalom Binyamin & Yehoshua Natan, ben Shayna Toyba
שלום בנימין בן שיינע טייבע ויהושע נתן בן שיינע טייבע
Cure Canavan Fund is a registered non-profit 501C3. Donations to Cure Canavan Fund are tax-deductible. EIN# 83-4489648
The Landsman fam, a few weeks ago on Purim