Ronnie and I wont ever be able to tell you how thankful and how much it means to our family the support that was raised for us. Since August 11, 2016 (Lewiston’s official diagnosis day) over $70,000 was raised for our family – truly mind blowing! That’s a lot of money. Ronnie and I both want to be good stewards of the money, so in keeping with that we wanted let you know where it all went.

In continuing with the “raw and real” – here is the truth about Ronnie and I. When we found out Lewiston was on route – Swayzie was 3 months old. There was no way I was going to qualify for Maternity Leave as I wasn’t returning to a career or role with a company as an employee, Ronnie is self employed and there wasn’t some awesome benefit package or RRSP saving contribution plan that we had to fall back on. Things were already tight as I once was the larger contributor to our family and no longer bringing in what I use to. We were making it work but it was about to get a lot tougher. We trusted the good Lord, and did our best to reduce spending, sell what we didn’t need and maybe what we did need including my car to really cut expenses as we prepared for Lewiston’s arrival.


Lewiston arrived on May 25, 2016 and it was bliss until the end of July, dooms day hit us on August 11, as we found out that Lewiston did in fact have SMA type 1 – our worst fear confirmed. Read about that day here. So on August 13 a Go Fund Me account was set up for us by our close friends. Money quickly starting rolling in, and the funds grew to support us. People wanted to help and this is what they did. So where did all the money go? How did we spend $70k?


The long and the short of it goes like this. We used the money to cover regular life bills, pay for our mortgage, and medical expenses (as we have very limited coverage). We paid off debt that we weighing us down, we paid for a funeral (which is mind blowing at how pricey they can be). We then set some money aside for Swayzie’s education fund, and purchased life insurance for her, too late to get it for Lewiston – I highly recommend this for your kids – the policies are not huge and don’t cost much – you just never know. I pray you would never have to use it.


The fun part of spending the money besides on coffee and shoes (yes I bought shoes – shoot me my son was dying) was that Ronnie and I were also able to bless some families that didn’t have as loud of a voice as we did. They were suffering in silence and struggling, so focused on the care of their own children that extra money was no where to be found. We are grateful that we had the resources to do this and help when others so desperately needed it. THANK YOU. I know the families are blessed and were able to breath a little bit easier.


After the funeral and that outrageous bill we splurged and went on a trip to Maui just the two of us to chill out, grieve, read, and just catch our breath from the past 4 month whirlwind. And if I am being really honest I had a few shopping trips to try and make myself feel better, new shoes for the funeral, a new bathing suit for Maui and setting up a playroom for Swayzie in our basement. The shopping was fun, well at least in the moment, but really not much more than that. So after shoes, a funeral, medical expenses, bills, debt , a trip, a lot of Starbucks coffee and just daily life…….we are putting the rest towards our future family.


We want a big family. We both come from families of 3 siblings. The safest way for us to do this is now through IVF. Ronnie and I both are confirmed carries of the SMA gene…..all of our children have a 1 in 4 chances of life with SMA type 1. (Not great odds unless your betting on something with a better pay out). However – thank you modern medicine and the genius that created IVF and genetic testing – they are now able to test the embryo and give us the best probable chance at avoiding SMA. We would like to avoid this heartache if at all possible. Truth be told the SMA journey just plain sucks. (Insert other choice words in your head if you wish, my mom will be reading this so I wanted to keep it clean). We would both prefer to avoid more kids with SMA so we are starting our research into IVF.


From what we have researched, IVF isn’t a cheap way to have a child (bless you if you have gone down this journey before). We are also looking at adoption as that has been on our hearts even before this whole messy SMA thing came along. For now we trust God, press on and take time to plug into what we feel called to accomplish this year. We long for Swayzie to be a big sister again and keep that prayer. We aren’t rushing into anything other then allowing Lewiston’s Legacy to live on and to live as fully and joyfully as possible with some kitchen dance parties along the way.


So if you’re still reading this and you made a contribution to us. THANK YOU. THANK YOU for following a nudge and then helping us not be stressed financially while we battled for our sons life and THANK YOU for giving us the opportunity to chase our dream to continue to be parents and grow our family.


With love and such thankful hearts,


Jess & Ronnie