My Story & God

Hello! It has been an exciting past few months in my world. A video has been published to share my story with being born with Alpha Mannosidosis. It has been a long time coming, but it is finally out. I am excited, but still a tad shy about sharing.

Truth is I don’t want the spotlight all on me. It is not about me. It is about Him. This story wasn’t something that I have created. It is something that I have experienced. It is something my parents experienced. This story solely comes from God.

All the glory goes back to God.

He knew that the genes my parents would cause a genetic issue. He knew everything I would experience with being born with Alpha Mannosidosis. He knew I would go through all the trials and tribulations. He knew I would constantly smile. He knew I would be where I am today. With all this being said, I don’t want this video changing the way you view me. This is my story and there is a lot of hope that can be found. Hope for a future. Hope for living a life you weren’t promised.

Through the interview process to the photos that were taken, it was a tremendous experience. I am so glad with what they’ve captured and shared in the video. The story is definitely a hard one to consolidate into a 4-5 minute long video. Years and years of information crammed into that short amount of time. They did a fantastic job. Am I glad we have a video to easily share my story? Yes, absolutely!

If you would like to watch the video, go right ahead. I’ve attached it 🙂

Life got very busy and I’ve been quiet…

Hello friends! It’s been a little quiet here on the blog. My life got busy. I am really working on posting weekly to this blog. I absolutely love writing and sharing how I am ‘Achieving the Impossible Today”. haha get it 🙂 Anyways, let’s get to it!

New Seasons

If you are human, you’ve probably noticed that you go through different seasons during life. There may be times in your life when you are busier, happier, frustrated, or whatever it may be. New seasons can be scary, exciting, and joyous. There are new things you have to get used to and some things you have to say goodbye to (don’t worry, I am not getting rid of this blog anytime soon!!).

My life has been on the slower boat recently and I am stating to receive a little acceleration on this boat. With the extra acceleration, I am wanting to hold on to the sides because it is a new feeling and experience. As the boat picks up speed, there are some bumps along the way that I am trying to overcome as well as some wind in my face.

The season I am coming out of is a slow paced and more relaxed life. It was a very beneficial season that I am happy for. While I was living through it, there were some difficulties. I wanted to constantly be doing something or engaging with my friends. It was a resting time for what God was doing within my life and what He is calling me to.

Callings for this season

The biggest thing that God has been teaching me and continues to teach me is rest. We live in a super fast paced society and this is counterproductive in the views of our society, but I am working on taking a Sabbath every single week. In this time, I would be able to spend time with Him, pray, and give my body a break from all that is going on. I will definitely keep y’all updated on this sabbath day.

There remains, then, a Sabbath-rest for the people of God; for anyone who enters God’s rest also rests from their works, just as God did from his. Let us, therefore, make every effort to enter that rest, so that no one will perish by following their example of disobedience.

Hebrews 4:9-11 NIV

I am now getting involved with several organizations (Fearless Movement, Fearless Women Ministries, ISMRD, Craniofacial Connection, and SNJ Millennials). Majority of these organizations I am attending events, but I am also volunteering my time in a few as well 🙂

I have started an instagram page for this blog! Woohooo!! I will be posting when I am posting these blogs as well as any updates for Achieve the Impossible Today. To follow the instagram, please click here.

Overall

This new season is an exciting time for me. I can’t wait to see what God does through me within this season. I am working on making a schedule, so I can make sure I post every week for this blog. I will also be making some adjustments to the website, so keep an eye out for some changes. That’s all for now.


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.

Spring Break

Where does the time go?!?!? We have reached spring break. This has been the longest and the shortest time ever! Long because of all the challenges this semester has brought, but the shortest because of all that I’ve been doing.

Spring break is finally among us. Not going to lie, I thought it was last week. Big mistake!! I got all my work done for the week. To think we are more than half way done the semester is absolutely crazy.

There have been so many blessings that have come from this semester alone. It is simply a miracle that I am even in school right now and taking two classes. After my classes this semester, I will have eight classes left until I finish with my bachelor’s in marketing with a minor in psychology.

Things I am so thankful for in regards to life and school this season:

  • Being able to read textbooks
  • Seeing friends
  • Learning guitar
  • Connecting with Alpha Mann families
  • Food prep for the week
  • Finding a new love of chores
  • Neurofeedback 3x a week

God has been moving very quickly within this past week (during spring break). It can be a tad overwhelming, but also a huge confidence booster. It is hard to know if we are following our own desires or His. When He moves, He moves in amazing ways. My complete trust is in Him because I have seen things that I would have never been able to do.

This spring break has brought lots of ideas and potential long-term things in motion. As I work on these things and these things come to fruition, I will be sure to let y’all know. God’s timing is always better than our own timing. Remember that.


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.

Rare Disease Day 2022

Rare disease day is a special day for everyone who has a rare disease or knows of someone with a rare disease. There are over 300 million people living with a rare disease. Some rare diseases do not have names and/or treatment options. To find out more info about rare disease day please visit: https://www.rarediseaseday.org

Welcome back to the blog!!

Hello!! It’s been way too long since I have written a blog post. In writing this, God has just shown me what He has done in my life over the past 22 years. I am so thankful with where God has me and everything that I have had to go through. Not everything has been easy, but He has a greater purpose than I could ever imagine. He uses everything for His good! If you have any questions about what I have gone through or literally anything, I would be more than happy to answer! I love sharing my story with others 🙂

My Story

Wait, you were born with a rare disease??

-yes, it is called Alpha Mannosidosis. It’s a lysosomal storage disease meaning there is buildup of toxic materials in the cells body due to an enzyme deficiency. My body was essentially missing one enzyme and that particular enzyme created an issue with all the cells.

How could something like this happen?

-it’s due to genes. It’s a genetic disease. My parents had a 25% chance of having a kid with Alpha Mannosidosis due to having the same mutation on the MAN2B1 gene. Crazy stuff, I know!!

What happens overtime with this disease?

-Alpha Mannosidosis is a progressive disease meaning, it will become worse overtime. I personally have had symptoms of: hearing loss, cognitive issues, memory issues, processing issues, balance issues, muscle issues, bone issues, etc… This disease can lead to being in a wheelchair and having difficulties communicating and everything becoming more difficult.

Yours doesn’t seem to be progressing, why??

-There are treatments that are not technically fixes due to still being in trials, but I was given a bone marrow transplant to stop the disease from progressing. It was a long path, but was worth it. My life changed forever and I’m so thankful that I had to go through that rough journey.

Is bone marrow transplant the only option?

-yes and no. In the US, bone marrow transplant is the only option. In other countries, people get enzyme replacement therapy. The downside to that is it is a continual process and is super expensive.

How long ago was your bone marrow transplant and do you have any challenges to this day?

-18 years ago as of October and yes I do. I have had some bone issues, but majority of my challenges are more focused on my brain. The bone marrow transplant stopped the disease from progressing, but whatever was done was done. I have challenges related to my memory, processing, and a few other things.

Will these challenges ever go away?

-simple answer is we do not know. Right now, I am doing a therapy called neurofeedback and it’s essentially training  my brain how to act. There’s been so many advances in the idea of neuroplasticity and how one day I may have the possibility of having no issues related to my brain. I have prayed about this, given healing within my dreams and people have also told me that God told them that I will be completely healed. We are believing that one day I will be healed.

Whenever I see you, you have a huge smile and an amazing joy about you, how is that if you’ve gone through all this stuff?

-One answer for this… God. He has done so much that would be way too much to write within this. He has taken me from the bottom of bottoms and has given me everything that I would ever need. I have experienced the fruits of the spirit because of leaning to Him in everything. 

What would you say has been the best thing to happen to you?

-there are millions of things that happen to us every single day. I would say that it was God bringing me to church through my best friend and meeting me where I was. Not many people know this, but I’ve always wanted to remember something from when I was younger. I have absolutely no memory due to what I was born with. My memory even from a few years ago is nonexistent. But when I went to church with my best friend 3.5 years ago, God showed me a little snippet of when I was in the hospital. I was looking at myself and I was as happy as could be. My parents said that I was always a happy kid in the hospital. They couldn’t believe it, but to me it wasn’t anything out of the ordinary because I was new to this thing we call life. 

Before you go…

I just want to leave y’all with this.

I am a child of God who happened to be born with Alpha Mannosidosis. Of course the journey has been hard, but we all have challenges of our own. We are all unique and that is absolutely amazing. God has created us to work together in this world. Rare disease day is just another day, but this day shows us that even when we are different we still have our own strengths. 

Uncovering 2021

How’d We Get Here?

Somehow we are just about done the first week of 2022 and time just keeps flying by. I’ve wanted to write a review of 2021 for a little while now and apparently just getting to it now. Overall, 2021 brought me a lot of lessons and was a big development year of my walk with Christ. I am going to take you through some of 2021’s most enjoyable, hardest, and interesting periods of my life. Make sure to buckle in for this roadtrip.

Getting Seated & Situated

During Christmas of 2020, I received a 2021 planner that was set up for writing goals, what I am grateful for, lessons, etc. In the beginning of this book, there was a little section for setting an intention for the coming year and a few other fun things. Each month consisted of a monthly calendar, things to track mood, a notes section, and a monthly review. Throughout the month, I used the notes section to track everything that I did and went through the monthly review.

Intention for the Year: To become more of what God has created me to do. I will achieve this by staying in the relationship with Him, working on Uncovering Joy, getting involved with church, learning about the brain and psychology, and personal development.

Conversation Starters During a Long Journey

There has been a decent amount that has happened in 2021 and it blows my mind. I want to shine light on a few simple things that were key events, what I learned, and God being in the midst of everything.

  • Starting new habits too quickly can cause you to loose everything you were trying to build.
  • Change is okay and God will direct you to the right people.
  • Don’t idolize the issues you are facing. You will be throwing yourself pity parties. Instead, give it to God and He will get you through it.
  • Taking care of our bodies (food, exercise, etc.) because they are temples. 1 Corinthians 6:19
  • If God tells you to do an activity/pray for someone, He will make a way and help.
  • Toes are more important than one would think. (I broke one and could barely walk for a few days.)
  • God will close some doors and open other doors when we follow Him.

You Are Half Way There

In a nutshell, 2021 was a year of growth. At the beginning of the year, I was asking God for a word. This was my first time doing this, so I wasn’t sure if the word I was getting was from me or from God. Growth was my word and we grew a bunch. When I think of growth, I think of self-development and growing in a “worldly” sense. I never imagined I would grow the way I did through some of life’s circumstances. Below are three examples of growth in 2021.

One of my biggest challenges that I face as a person is change. At the beginning of the year, I found out my doctor that I had been seeing for the past four years was moving out of town. This broke me and sent me into so much unnecessary anxiety. We eventually ended up with going to my current doctor and it was a seven week period of not doing my brain therapy. Months later, we are doing the brain therapy consistently and at my house remotely.

Following God into the unknown can be a little scary. I had been praying months in advance for being a part of youth ministry. God told me June and I was going with what He had told me. A week before I start youth, I was still experiencing some of the drunk feelings with my brain. Of course, this made me a little nervous. Youth is a very overstimulating, high energy, and a few hours long. The way it looked, I was not going to be going to youth in a week. Let me tell you, a week later I went to youth and could not believe my eyes. I did not get overwhelmed. I was extremely grateful and through this, I have learned how important it is to follow what God tells us.

Diets, diets, diets. That is all you ever see online. What is the next biggest way to lose the weight for bikini season? In 2021, I went plant-based for a total of three months. During this time, I felt amazing and absolutely loved it. I transitioned back into my regular diet when my body started craving meat. I believe that our bodies will tell us what they need. Even though this was short lived, it has helped me gain control over staying gluten, oat, and dairy free. I am now learning how the female body is and how to nourish it properly.

You Are Arriving at Your Destination

2021 was definitely an interesting year. I can not believe another year has been lived and we have already entered into the next year. I have been praying for the season that I have just entered into and I am so extremely excited for this year.

God has given me the word “faith” for 2022. I have no idea what this means, but I know God will reveal it as the months go on. There have been a lot of doors that have closed in 2021 and God has been opening a lot of new doors for 2022. I am excited to share about these things in another post soon! I will share, that I am working on reading the Bible in chronological order during 2022. It can be a little daunting, but a there is a group of us going after this goal.

Looking into Achieve the Impossible Today in 2022 will be posts every other week. I will be sharing about life events, things God is teaching me, and new things for Achieve the Impossible Today.

For now, here are some photos from this past year 🙂