“Famous In A Small Town”

I use to always joke and say that I was “Famous in a small town” and I’d say that because the town I live in both sides of my family grew up here. So most people knew someone from my family.

But over the years I’ve started to make a name for myself in this town and now people don’t necessarily know me because of my family. They know me because of my positive attitude and I’m known for always laughing and smiling.

Most people know me from my past job at the local thrift store where I worked for 12 years and while I was working there I knew people knew me from there. But last week I decided to leave my job and start towards another chapter in my life.

I found out just how much people cared about me and just how well known I had become. Once I started to announce to customers that I was in fact leaving I started to hear many of them say “We are happy for you, but sad for us”. I was the face of that store and now that I’ve been gone a week I’ve been told by many of my fellow coworkers how many people have come into the store and asked about me. I’ve even heard a few customers say they didn’t come in last week for a few days because they knew I wasn’t going to be there and they needed time to adjust.

I know my fellow coworkers and customers understand my reasons for leaving and are curious as to see where my life leads me next.

I will be honest, I am not exactly sure where life is leading me. But I do know that God is starting to open doors for me. To me I am starting a career in which I am investing in myself. I am hoping to write and hopefully become a motivational speaker. I am going to start sharing my story even more with the world.

I know this is going to take time and I am going to have to start taking risks or being open to new ideas and new adventures. Life feels as though it is about to get a lot more interesting and I can’t wait to start to become the person that I knew I’d always become.

So join me on this journey as I start to find out just what it is life has in store for me…time will tell, but I believe great things are going to start happening!

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Saying Goodbye After 12 Years

On June 3 I officially said goodbye to the job and career I had held for twelve years. I have worked at Goodwill since I was 18 years old.

For the last year or so I’ve gone back and forth with my decision to stay or leave, however I started off this year knowing that I would be saying goodbye. I just knew that my life was getting ready to take a different turn and I had to accept the path that was being laid out for me.

I started off this year thinking about how I once had a dream of writing my book and sharing my story and maybe even doing some motivational speaking. I realized that I had let that dream slip away and knew the time is now for me to take the risk and leap of faith and go after that dream.

So I am taking some time for myself and figuring things out. I do not know where my life is headed but for the first time in a long time I am excited to start a new chapter. I am working towards a happier me.

Writing has always been my goal. I’ve been told I write well but for me when it comes to talking about my life and sharing my story I have that excitement and joy because I know I’m teaching others and that is when my positive attitude really shines.

This year has already had so many changes but I knew from the beginning that my life was on route to much greater things…even if I couldn’t see it yet. So here is to the next few months and me doing what I was always meant to do!

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Family Is Everything

I am lucky enough to have a supportive family who has always stood behind me and been there for me. Over these last few years my family has grown even closer.

We believe in family traditions. Every Sunday my family gathers for Sunday dinner and the kids play while the adults sit and talk and share stories. Not many families do that sort of thing any more.

My siblings and I grew up at our grandparents farm and on our farm. Growing up we would always go to my grandparents farm for holidays and we would see the aunts and uncles and all our cousins. You don’t hear about that kind of stuff much any more. Families get busy and don’t take the time to gather like they use to.

That is a tradition that my mom, siblings and my nieces and nephews are trying to carry on to the next generation. At a time when life can be very fast paced and busy, it’s easy for people to get lost in every day life and forget the important things…like your family.

I have missed out on many family dinners because I’m usually at work. I believe for years I lost myself in my career, many people do. But it’s something that I don’t want to lose any more.

These last two years I have gotten to know my family more now than ever. Our family unit has come together in a way that is truly amazing.

I have 13 nieces and nephews and always love getting to see them and spend time with them but over the years, life happened and I haven’t been able to see them like I use to. I miss that so much.

I don’t have a family of my own like all my siblings have. I never really knew if that was in the cards for my life and I still don’t know. But I have my mom, my siblings and my nieces and nephews. Years from now I want my nieces and nephews to have memories of me too, not just memories of me never being at Sunday dinners and always being at work.

I have taken pride in my career for these last twelve years. I was raised to believe that you work hard for what you have. But with that being said when I look back on my life I would rather have memories.

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I hereby officially step down…

I started off this year knowing it was going to be a year full of changes. My new year quote was “New Year, New Chapter, New Beginnings”…and eventually I added “New Car” to that quote.

We are only three and a half months in and already its been a year of changes. After 12 years working towards the career I now have, I have made the decision to step down from an Assistant Manager’s position. Physically I can’t do the job any more and it has been a very difficult process for me to accept.

I am thirty years old, I shouldn’t be looking to “retire” at thirty years old. I have worked for 12 years towards the career I had only to let my body tell me “You can’t do this any more”.

It’s something that has been weighing on me for at least a year now. I have a very strong work ethic so for me to have to accept that working and working so hard I just can’t do any more has been very difficult.

Just like in any other way of my life I have never given up and so to me stepping down feels like giving up in away. But I can no longer fight that battle and have been working towards accepting this. It hasn’t been easy for me.

I have not completely figured out what the next few months will look like. I have stepped down and started to slowly work towards finding the next step in life.

This next step seems to be the “new chapter and new beginnings” stage. The goal is to chase my dream and publish my book. That is where my passion lies now. Sharing my story with the world.

They say change can be scary, but they also say that regret is even scarier. If I were to keep putting off my dream of sharing my story, then I fear I’ll end up with that regret and that is something that I don’t think I could do.

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New Year, New Car

I got my first car when I was 17 years old and learning to drive. It was a 2000 Ford Focus and has been a good car for me these last 13 years.

But with the new year it was time to buy a new car and get an upgrade. I found a Toyota Corolla.

For years I had put off even considering buying a new car because I know the hassle it is to get the car to a point where I can drive it.

Most people don’t realize what all has to be done in order for me to accommodate a new car. Due to my size I have to get a switch installed that will disable the airbag because if the airbag were to deploy it could seriously injure me. Also I have to get pedal extensions and get them installed in my car so that I can reach. Getting the airbag disabled can take a while because I have to send in a form and get the approval and can’t do anything until we have the proper approval.

I have people ask me almost every day when I’m going to start driving the new car and I hope to drive it in a few months.

Just another obstacle of being a little person.

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2019- New year, New beginnings, New Chapters

When 2019 rolled around there was something about it that felt as though it was going to be a year of positive changes.

With all the latest research that has come to light with Saul Wilson Syndrome, I feel as though the time is now. The time is now for me to write and publish that book, that I always dreamed about writing. The time is now to share my story even more, the story that I kept hidden for years.

I started this blog 7 years ago because I knew that I needed my story heard. I knew that one day people would find my blog and be able to read about the life of someone that is diagnosed with the same dwarfism that their child has.

I wanted my blog to be the inspiration to people to let them know there was hope out there and that someone had the courage to be open about their life so that doctors could learn from it and help them.

It is a new year, and yes I believe this is a time for new beginnings and there have been new chapters added to my book…so yes the time is now and I can’t wait to see what life has in store for me!

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Documentary Debut Thanks to Barcroft TV

Hello everyone,

Barcroft TV did a short documentary on my life and what it has been like trying to find answers.  Please check out the article and video:

Barcroft TV

http://www.barcroft.tv/rare-dwarf-saul-wilson-syndrome-louisville-condition-doctors-help

I am so honored to share my story with the world.  Please feel free to share the story on social media as my goal is to reach as large of an audience as I can in hopes to find more cases.

Right now there are only 14 cases known world wide and I am hoping by sharing my story people might see it and say “I think this is what I have”.  I want them to know they are not alone!

I didn’t meet someone with my dwarfism until I was in my early twenties.  I know what its like to spend years wondering why no one else out there had what I had or doctors couldn’t give me answers.  My goal is that no other person has to feel that way.

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Stories From Around The World

When I started writing this blog I wrote my story, because there was nothing else out there but I had hoped one day it would become the outlet that shared not only my story but anyone else’s stories out there that also had Saul Wilson Syndrome.

So today I am pleased to add to this blog for the first time ever, stories about 3 other boys who have been diagnosed with Saul Wilson Syndrome:

In this first article, meet Jaxon and Cooper who brothers and they both have Saul Wilson Syndrome:  https://lancasteronline.com/opinion/editorials/a-special-team-and-a-special-boy-editorial/article_aa5ce360-b82b-11e8-b15d-6bd3d1015454.html

In this second article meet Piet:  https://www.seoghoer.dk/nyheder/saa-sjaelden-er-hans-sygdom.

At the beginning of last year I only knew of one other person with Saul Wilson Syndrome, now there are 14 cases!

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Finding the Gene For Saul Wilson Syndrome (Medical Articles)

Hello Everyone, below are the medical articles that the doctors wrote about Saul Wilson Syndrome and finding the gene.

A Recurrent De Novo Heterozygous COG4 Substitution Leads to Saul Wilson Syndrome, Disrupted Vesicular Trafficking, and Altered Proteoglycan Glycosylation:  https://www.ncbi.nlm.nih.gov/pubmed/30290151

Zebrafish from UO helped find cause of Saul Wilson Syndrome:  https://around.uoregon.edu/content/zebrafish-uo-helped-find-cause-saul-wilson-syndrome

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Newsweek Article

Thanks to Newsweek for being the first news outlet to pick up my story!

Here is the newsweek article:  https://www.newsweek.com/saul-wilson-syndrome-medical-mystery-rare-form-dwarfism-finally-solved-1152285

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