Carlinssia

MMA Mut 0

Hi all OAA members,

Every couple years I like to give an update on my life. I like to share my positive experience, thoughts, and success stories to encourage all of you, who have MMA or any genetic metabolic condition for that fact. Everyone can make it, I truly believe prayers and faith go a long way.

In February 2019, God blessed me with a second bundle of joy; I have a second daughter now. She is cheerful, happy, and loves to play. I am currently working at Burger King on my way training as a manager. I am planning to go back to school for medical billing and coding online, so that I can find a better job in the near future. I have to tell everyone out there honestly, please follow doctor’s orders as far as medications, they will really take a toll on your body and health if you choose to discontinue them. We are all special. I hope everyone stays strong through this coronavirus pandemic.

Stay strong. Please feel free to contact me by email, do not hesitate, chefcarlinssia94@gmail.com any questions or just feel like talking email is the best way to reach me. Enjoy the summer!

Carlinssia 
​From the Summer 2020 OAA Newsletter

Carlinssia

MMA Mut 0

 Hi everyone here is an update about me. I graduated culinary school in New York in April 2014 as a pastry chef. October 2014, I got married to the most amazing, caring man ever. I am blessed. May 2015, my beautiful daughter was born natural delivery no complications and she doesn’t have MMA. I’m so happy, but her father is not carrier so that gave me better chances. I am currently working a full time job in NY in Times Square and my daughter is in daycare and is two years. old now. If anyone wants to reach out or contact me please email me  chefcarlinssia94@gmail.com. I don’t have social media websites and I might take long to reply but I always reply, I just work a lot.

​From the 2017 Summer OAA Newsletter

Carlinssia

MMA Mut 0

I was born with the condition called Methylmalonic Acidemia (MMA), type mut 0. I am Vitamin B-12 non-responsive.

When I was a baby, I looked perfectly healthy, and just like any other child I got sent home. My mother tried to nurse me and I would not drink milk. Every time she would try to give me milk, I would throw up. I would cry consistently and loud because of the simple fact, I was hungry. A few days later, my parents rushed me to the hospital because I kept crying and would throw up every time they gave me milk. The nurse on the elevator saw that my eyes had rolled to the back of my head so she took me from my parents’ hands and rushed me to a doctor and my parents had found out that I had this rare genetic condition called MMA. This made them very worried for me and my future. They took me all around the world to many doctors to find out about my rare medical condition. When I got started on the formula, Propimex-2, and Levo-carnitine, my parents had a hard time finding a pharmacy to supply these medicines. Even today it is hard to find a pharmacy that will supply my medicines because they are so expensive.  I had many hospitalizations as a child, but with my parents looking after me and me now taking my medications every day, I am better than ever and I am a miracle child. All the years in my childhood, all the doctors doubted my life expectancy and told my parents that I will live a short life. When I went to NIH in November 2012 for the first time, I found out that I can lead a full healthy life; all I have to do is take my medicines and count my protein so it adds up to 40 gm per day. Since I have been on this diet, I feel better than before and my weight is finally consistent because before it would constantly fluctuate and I feel energetic.

While I was at school, I always took time to understand the material; I needed repetition, some people labeled me as ‘slow.’ I had an IEP from fourth grade onwards and I was in speech class until ninth grade. In my classes, they gave me an additional teacher that would help me out and explain things if I did not understand something in class. They still give me extra time on tests and quizzes. No matter how difficult school was, I did it. I graduate high school June 24, 2013 and I got accepted into Institute of Culinary Education (ICE) in New York. I will be majoring in Baking and Pastry and my goal is to become a pastry chef and someday in the future to own my own bakery.

By: Carlinssia
chefcarlinssia94@gmail.com
East Brunswick, New Jersey

From the Summer 2013 OAA Newsletter