Karli

Propionic Acidemia, Age 34

My name is Karli, and I am now 34 years old. I live in my own apartment in Winona Minnesota. My OAA Story had gone out in the OAA Newsletter in 1998 and I would just like to give an update on where I am today.

I was first diagnosed with Propionic Acidemia (PA) when I was ten months old. And wow have I come a long way. When my story came out in the 1998 newsletter, I was taking 32g of protein a day and most of that was through formula which I call bug juice. Today I am taking 55g of Protein from food intake and about 20oz of formula (Bug Juice). I still get tired very easily of course with my low stamina and muscle tone. But I live each day to the fullest doing the best to my ability.

I graduated from High School in 2007. I did some volunteering at a local nursing home in the summer helping with the afternoon activity. I did try a couple of online college courses after high school, but it wasn’t the right fit for me.

In 2009 I started working at ABC Woodland industries/Twice is Nice. This is a place where it gives people with disabilities a chance to work. I worked mostly in the secondhand store. Which gives each individual the opportunity to try different areas to see what the right fit is for them. I worked as a cashier, working on pricing/tagging/ hanging clothes. I was paid by subminimum wage, but I was still working and was feeling proud of my accomplishments.  Woodland connected me with workforce Development which helps people with disabilities find jobs in the community that is the right fit for them. I felt I was capable of so much more and wanted to prove that to myself and others. They helped me create a resume, cover letter and help me figure out what my skills and strengths were. In my assessment I was found to be very social, enjoyed working with others, and loved working with the public. Workforce development continued helping me apply for employment at many community businesses. I ended up getting my first Job at Alco Department store. Things we going smoothly for approximately 6 months until my supervisors became less understanding of my needs and stamina. So I ended up putting in my two weeks’ notice and then was on the job hunt again, working with workforce development. I resumed my twice is nice position while I continued the job search.

With my sister in college, and my younger brother making plans to attend college after his senior year, I felt it was time for me to spread my wings and leave the nest. However we needed to come up with a plan, where both my parents and I would be comfortable with me living on my own.  We ended up getting in contact with the Arc of Minnesota after my dad read an article about a new program called “Housing Access Services.” And it was an answer to a prayer.  We met with the team and we went over what I was looking for and what kind of place I would like. I was ready to move out but still wanted my parents close in case of emergency. After contacting the Arc of Minnesota and Housing Access Services things moved pretty quickly. I was able to find a place about 5 minutes away from my parents. But I was still going to be independent and living on my own. I was the 1st individual from the state of MN to receive assistance.  Housing Access Services also helped me find different programs to help me financially. For example, getting me in contact with Sec 8 and an energy assistance program.

In 2016 I ended up getting a job at Sterling Drug Store in Caledonia MN. And everything was going so smoothly. Co-workers and supervisors, were amazing and understanding. I was working as a cashier there. The job was also slow paced.

With the Arc of Minnesota, I became involved in SAM (Self-Advocates of Minnesota). With being involved in self-advocacy I have blossomed and this program has helped make me the unique individual I am today. I learned to speak up for myself to let others know what I want, but I also have the chance to give others a voice who aren’t able to get their voices heard. I have been involved in self-advocacy ever since, going on 14yrs now. With being involved in SAM I have taken many leadership positions in the self-advocacy group. I had started off as the Media/Legislative reporter and moved up to Historian, later to Vice Chair and then Chair.

In 2017 I started getting lonely in my apartment. I was coming home at the end of a workday to an empty and quiet apartment. I needed to find a nice companion. Someone who would be there to greet me when I came home from work every day and that is where my dog Ms. Lady Pugglesworth came into my life, she was a blessing in disguise. I would come home from work and there is now someone to greet me, and I talk to her and tell her about my day.  She is a great cuddler too.

Now when I moved out in 2009, I was living in Eitzen MN which is a very small town.  And even though I now had a dog to keep me company I didn’t have much of a social life. My social life was considered going out to eat with my parents. I needed a change.  In 2019 I used the Arc of Minnesota’s “Housing Access Services “Program again and moved to Winona MN. Although when you move to a new town you need to have a plan.  Mom and dad were going to be an hour away instead of 5 minutes away.  So I needed to have a good support system. We ended up getting connected with Cardinal of Minnesota where I have staff that come in about 4 times a week to help with errands, med check, or just a check in to see how things are going. Besides that, I still have my independence.  The reason I chose Winona was because I already had a connection with SAM Members there who were part of my self-advocacy group. I am now involved with Winona People’s 1st which is a local self-advocacy group. I am going bowling every week through project compass through Winona Community Ed. So, my social life is pretty busy. Sometimes it gets so crazy that mom has a hard time of keeping track and some months I even need to print out a calendar.

Today I am working at my dream job at the Arc of Minnesota as a Self-Advocacy Associate.  I help host and support at self-advocacy meetings. I help create and present workshops for self-advocates and provide information, resources, and training about self-advocacy, and so much more. The work I do has impacted others and their life situations in the easiest way. I started this job in December of 2021, and I am currently in that same position. My hours for my job have increased. I started off at 10hrs per week and am now up to 12hrs per week. I am loving every minute of it.

Over the years there have been blessings, struggles, ups and downs, and achievements. But with my faith and the support that I have been given by family, friends, coworkers and programs I have overcome many barriers and obstacles. My faith has become stronger, and I have become more confident in myself. I would not be where I am today without my faith. I live each day to the fullest and thank God for everything that he has blessed me with. I have been blessed with two amazing nephews who fill my heart with love and joy. My life has been like a transformation of a Butterfly. I used to be in my own little chrysalis and now have emerged into a beautiful butterfly and spreading my wings. I have accomplished and achieved many things. I am proud of who I have become with just putting my best foot forward and trusting in God. He is by my side to lead me on the path that he has chosen for me.

 I have the Dream Job, great living space, social life. Everything is good. I can’t wait to see what the future holds.

I am surrounded by love and support. My parents still live at the same address. My Sister is married and has 2 boys, and my brother just got engaged. With my faith and the love and support from my family I would not be where I am today

Karli

Winona, MN

karli.harguth@gmail.com