Our fears were recently confirmed during our meeting with the Pediatric Neurologist at AB Children’s Hospital. In Winnipeg, we feared this diagnosis but were led to believe it wasn’t even a possibility. Today the scary diagnosis of SMA – Spinal Muscular Atrophy Type 1 was confirmed.
So here is the crazy thing to this all. Most of you who read this will have no clue what SMA is (click here to learn more about it) And those that have heard of it may be because you know of Ishan and Shanaya – you have donated money to help them buy a wheelchair accessible van, been to my spin fundraisers, donated cash to our baby pool and just gave because you knew the cause was near and dear to my heart. We felt led to journey along side a family who needed some extra care. It is so crazy for us to know so intimately how horrible and challenging this diagnosis can be. What we could have never even fathomed possible for our family is now our reality.
Lewiston has been diagnosed with SMA Type 1. His life expectancy is less than 2 years and because he has displayed signs so early on they are preparing us for less than a year.
For now he is stable and we hope for few good months ahead before breathing and eating become our biggest challenges. We are gonna make these months count. And we will not lose all joy because of the cards our family has been dealt. There currently is no cure for SMA.
We have had an overwhelming response of friends and family asking how they can help. I don’t want to ask for help but knowing the road ahead, we will need it. So we will graciously accept it….
Praying for a miracle for Lewiston. We will be trusting steadily in God for peace, strength and purpose. Just because we didn’t get the answer we wanted from all your prayers doesn’t mean good can’t come from this. Continue to lift us up. We will need you in days ahead
– Jessica & Ronnie