Welcome back to the blog! Life since my last post has been a bit crazy and wild. This is the typical yearly post that I do in regards to another year since I went through a Bone Marrow Transplant (BMT) for a rare disease called Alpha-Mannosidosis. This years post will be a bit different, but I think you will like it. Here’s to celebrating another year of life and some new freedoms 🙂
Welcome!
Hi! It’s Sarah and this is my blog. It’s been a wild time since my last post. But if it’s your first time here, I am celebrating 22 years since I went through a bone marrow transplant for a rare disease called Alpha-Mannosidosis.
What’s Alpha-Mannosidosis?
It’s an ultra-rare Glycoprotein Storage Disease. Essentially it was degenerative and my body basically was missing one enzyme and with missing this specific enzyme, it wrecked havoc on all the cells in my body. If no treatment is done, the body continues to degenerate and it affects muscles, bones, the brain, and everything in-between. There are now several treatments such as Enzyme Replacement Therapy and Bone Marrow Transplants.
What’s Your Story, Sarah?
My parents received the diagnosis for me having Alpha-Mannosidosis when I was 3.5 years old. I had 20 different doctors at this time due to all of the challenges I was experiencing such as ataxia, speech delay, hearing impairment, challenges processing the world around me, bone issues, etc. At the time of diagnosis, the doctors at that time had given my parents 2 options which were: 1) proceed with no treatment; 2) go through with an experimental Bone Marrow Transplant.
My parents decided for me to have a Bone Marrow Transplant and about a year after I went through a Bone Marrow Transplant when I was 4.5 years old. This was not an easy road. Any of the challenges I had before transplant were still present except for the hearing loss. The challenges weren’t getting worse anymore, they were just kinda there. My body was no longer deficient in the enzyme it was lacking when I was born.
The road to where I am today is only because of the Lord guiding us to different therapies and learning more about Him. One of the last challenges I had years after diagnosis was all the brain issues. In 2020, I had a dream where I would be completely healed and truly believed this was from the Lord. I had no idea the Lord could speak to us through dreams until He had given me this dream.
I write this today as being completely healed. There are no remnants of Alpha-Mannosidosis left. I am just a person figuring this life thing out. I have many friends, I enjoy baking, and learning how to cook. I currently do full-time missions with Jesus Club at the university I recently graduated from.
Some Reflection…
I don’t understand why He did what He has done in my life, but what I have learned through this journey is that He doesn’t have to heal, He just wants us to know Him and surrender our desires to Him. He doesn’t have to do any of what He does, but He loves us so much that He desires to heal and set us free on this earth by the enemy. As we live on this earth, we bring heaven to earth. The Kingdom of God has come near.
This year, the Lord has so graciously gifted me to be able to run again. I just ran for the first time without having knee issues 2 days ago. A perfect way to celebrate 22 years since my Bone Marrow Transplant. This is something I’ve desired to do ever since I had to stop running 8 years ago. It felt like FREEDOM!!! More on how the Lord allowed me to run in an upcoming blog post.
Thanks for reading! Check back soon for another blog 🙂
Achieve the Impossible Today 
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