We arrived in Dayton this morning and I’ve been wanting to address a question a few people have asked me; “what do you expect following the procedure?”
Arriving in Dayton this morning
This question is so loaded. The question is also a fair and reasonable one.
I’ve pondered this question over and over and over again.
We know the goal of the surgery has always been to “improve Benny & Josh’s quality of life”. But what does that even mean? Will Benny have less trouble swallowing? Will Josh have less reflux? Perhaps the boys will gain just a little bit of muscle control and be able to hold their heads up? Maybe the boys’ lifespan will be expanded?
Obviously improving their quality of life and extending their lives matters. We love our precious little boys and want the world for them.
But is it OK to want more?
Is it OK to want to hold their hands as they walk beside me?
Is it OK to want to hear them speak to me?
Is it OK to imagine them in therapy fighting to gain the skills that have eluded them so far in life?
When I pray to G-d to heal my boys I try to visualize them. I see the boys wearing yarmulkes, running, with their tzizit (fringes) flying behind them. We are outside of our imaginary house in Israel and they are running towards me. I’m kneeling, waiting for them to run into my arms and tackle me as they hug me.
And that is where the vision ends.
It is a hopeful vision, but perhaps a far fetched one. The collateral damage of this three and a half year fight with Canavan has been extensive damage to the boys’ brains. Can this breakthrough treatment repair the damage that has been done?
I think the only truthful answer is that we have no idea. But…
G-d is not limited by science. G-d has been alongside Jennie and me on this journey. And G-d sent us something special last week in the form of a news story about two girls from Canada with a rare genetic disease. Theirs is a different disease, but it was treated in the same manner that Benny and Josh will be treated; a vector surgically delivered directly to the brain. And the results from the treatment that these two girls have experienced is nothing short of remarkable.
A medical team in Canada performing a similar procedure to the one Benny will be receiving
I share their story because it gives us hope. And I share their story because it has helped with my blurry vision of Benny & Josh’s futures. Perhaps I am playing a dangerous game with my psyche. But I think the hope it provides is worth the risk.
We are here. We’re in Dayton, Ohio and the surgery is just days away. We need your prayers now. Please help us pray for nothing short of a miraculous recovery. We know it is possible. And we’ve all done our part. Now it is time for us to pray to G-d to do his part.
Thank you all so very much,
Gary & Jennie, Mikey, Benny, Josh, Evan & Racheli.
Please continue to have Benny and Josh in your prayers.
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 kiddos this afternoon in our Dayton house rental