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

19 Comment

  1. Mama J says: Reply

    Such a precious sweet boy! You guys are loved and cherished more than words can articulate. We’re on the journey together!

  2. Emily Myers says: Reply

    Wishing your family strength and many happy memories in the months ahead <3

    1. Jessica Olstad says: Reply

      Thank you!

  3. Osa says: Reply

    what a beautiful boy <3 If God is to take back this sweet boy before his time, then I must believe that intervention is divine and death is surely a release and not a punishment… I pray for your heart, for I can not imagine the road you are required to walk for him <3 God be with you in the light and in the dark, my prayers and thoughts are with you

    1. Jessica Olstad says: Reply

      Thank you so much. Keep praying we seek and need it every day.

  4. I am so sorry to hear of your challenges. I understand somewhat due to Karen being my sister; Ishan and Shanaya being my neice and nephew. My heart goes out to you. I will ask that Karen keep me advised if there is anything that I can do to be of assistance. It is hard, but you are stronger than you even know.

    1. Jessica Olstad says: Reply

      Thank you so much.

  5. Bhavin mehta ( CHACHIS TEAM) says: Reply

    Me (Bhavin ), My wife ( Neha) and My daughter (Dona) will Pray for Lewiston in our Temple and we will continue praying for his Good Health and Speedy recovery.

    1. Jessica Olstad says: Reply

      Thank you!

  6. Rav & JD says: Reply

    Hard to take eyes off that adorable face.Praying from the bottom of our hearts for a miracle and also strength for your entire family.

    1. Jessica Olstad says: Reply

      Thanks JD & Rav

  7. jen + says: Reply

    I am so sorry to hear of the challenges you are facing. I do not know you but came across your babies go fund me page and read it. I do know about SMA however. Just wanted to let you know people care and that your baby is just beautiful. Praying for his health to be strong

  8. Shawnna mchardy says: Reply

    So sorry to hear of his diagnosis, such a devastating blow. My youngest son Owen has SMA type 2 and was diagnosed at 8 months. Just wanted to mention that there are a few trials he may qualify for , gene therapy or Nusisnursin. Also using proper respiratory equipment (cough assist, suction and Bipap) and protocols can make it so there is no definite life expectancy. (My son was also given 2 yrs and is 5.5 now). If you need anything please send me a message! The SMA community is very supportive!

    1. Jessica Olstad says: Reply

      Thank you so much! Yes the SMA community is incredible. Thankful for the tightness and the support we have received.

  9. Vicki says: Reply

    Your story hits close to home. My close friend has a child who has SMA. He just recently turned 16 and is the strongest human being I have ever met. They have been through many challenges, disappointments and many praises also. My thoughts and prays are with you and your husband.

  10. Helen says: Reply

    Pain to big for words..Can we kneel in prayer to ask the Lord to put his healing hands on this beautiful child..May God help him and the family ,,we beg.Helen

  11. Karla Reimer says: Reply

    First, I feel as though I should introduce myself in a way… I was mindless going through Facebook and saw one of my parents friends (Jan Nestibo) had commented on a heartbreakingly beautiful photo posted by a photographer. I read SMA and my heart sank. My curiosity got the better of me and I eventually realized that you are the daughter to one of the couples in the ‘biker gang’ my parents (Ben and Marg Dueck) have spent time with – I now remember my mom coming back from your wedding and going on about how amazing it was! I started following a woman from BC on Instagram a while ago because she made beautiful teething necklaces (mama gems in case you’re curious) and found out her daughter was diagnosed with SMA-type 1 through that account. I’ve learned a little bit about the disease as a result and my heart breaks for you. I’m sure that the SMA community is small, so you’ve perhaps found your way to the mama gems account but if you haven’t, Michaela seems like a wonderful lady, real and honest and, as unfortunate as it is to say, there’s something wonderful about finding those people that understand the disease that has become part of your reality because they are on that journey too (I know this is true for me). I will be praying for you and your family often!

    1. Jessica Olstad says: Reply

      Thank you. Yes it is such a small world. Crazy just how connected we all are. Please keep us in your prayers. And yes – I have been following Michaela.

      Wonderful lady.

  12. Amazing… such a useful web-site

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