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.
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.
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.
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!
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:
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.
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!
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