Achieve the Impossible Today

Welcome!

Welcome to Achieve the Impossible Today! Whether this is your first time visiting or your 100th time, so happy to have you here. This blog is all about sharing my journey through life with Alpha Mannosidosis, a rare genetic disease. For this week’s post, I dug up one of my drafts I was working on about 2 years ago and completed it. It is all about where my passion comes from for sharing my journey and helping others. Enjoy 🙂

FYI, today (October 16th, 2023) is my 20 year anniversary since I received the bone marrow transplant! If you asked me how I was today, I’d say that defying the odds with what I was born with is an understatement.

A Rocky Start

My story begins with being born with many health issues. The doctors did not know what was wrong at first. Eventually, they solved the mystery… I was born with a rare disease called Alpha Mannosidosis. This disease affects every cell in the body and is degenerative. There were two options given to my parents: let me live without treatment or receive a bone marrow transplant. Option 1 of living without treatment basically means that my body would deteriorate at a rapid speed and I would not be able to do the normal things people do all throughout life due to the deterioration of muscles, bones, and my brain. Option 2 of receiving a bone marrow transplant basically means lots of medical treatment and trying not to die. But if making it through the treatment, it would mean living a life without my body deteriorating and living a somewhat normal life.

It was a very hard decision for my parents. Not many people had gone through the second option of receiving a bone marrow transplant. My parents had seen what the disease had done if left untreated. They didn’t want my future to possibly be less than it could. They made the hardest decision (I believe) in their lives and that was to go with option number 2 of bone marrow transplantation. They saw the potential this treatment had and knew it would be a challenging road ahead. They were hopeful it would change my life for the better.

Treatment

I was the 13th patient in the world to receive a bone marrow transplant for Alpha Mannosidosis. 13 is my favorite number to this day for this reason. I was only 4.5 years old when I went through this transplant. I do not remember anything that I went through and I am glad. With that being said, I’ve heard about all the medicines given, fevers I’ve had, and trips to the hospital after transplant. It is not an easy process, but it is amazing that the body can go through that and heal from it.

After transplant, there were a lot of therapies I went through to help me gain muscles back and learn things that I missed. The transplant stopped the disease from progressing and my alpha mannoidase enzyme has been in normal range ever since transplant. All of the challenges that I had from Alpha Mannosidosis were still there after the transplant. This is because damage had been done (especially to my brain) and at the time was considered to not be repairable.

The most recent therapy that I’ve stumbled upon thanks to the Lord has made the difference in my world. It’s called functional neurology. More on this in a later blog post…

Desiring to Impact the World...

I want to make an impact in this world. This may be a very broad and daring statement, but I mean it. We all have stories and life can get crazy at times. I see the value that people have in this world. Even though it may be chaotic, life is still pretty amazing.

Through the years, I have come to know how precious life truly is. We are all fighting some sort of obstacle or even obstacles. No matter our struggles, life is worth living. I have been in hospitals, hit rock bottom, seen a victory, & learned about truly living a life that’s worth living. The Lord gives us the breath of life and I really want to share of His goodness and His everlasting mercies. He still heals today.

My life has been flipped upside down, but now I get to learn how to be a functioning human who has a passion for sharing stories. More on this soon! But for now, it’s been a wild 20 years of healing and restoration. I am ready. Are you?

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Thanks for stopping by and reading this blog! Make sure to follow Achieve the Impossible Today, so you don’t miss a post. I am working on posting more consistently. If you have any prayer requests, feel free to comment them or contact me. As always, He can and He will help you through everything, we just need to seek Him first.