Q+A with Mary Caroline & Amelia
What is SLOS?
|Amelia: It’s a very rare genetic syndrome. People with this syndrome cannot produce the right amount of cholesterol. You are born with it. And there isn’t a cure for it yet. It can affect your major organs like heart, lungs, and kidney. But my sister and I are both have a mild case of it so it affected our growth, our learning skills, and some of our motor skills.|
|Caroline: It’s low cholesterol. The DNA strand that makes cholesterol is partially broken. I was born with it. It made me very sick when I was little. Some babies have it so bad that they die right after birth. But I have a milder case. It has affected my weight and height and my learning – it’s very slow.|
What is it like living with SLOS?
|Amelia: It is sometimes difficult because it made school and learning hard. I’m bummed because I cannot drive. And my speech isn’t very good. People struggle to understand me and I struggle to be clearer. It is disappointing because I feel like I have a voice and good ideas but I can’t seem to get them out the way I want to! And, throughout my life I’ve struggled to gain weight. So I’m not as strong as I’d like to be. Also, it is hard to find friends my age that will hang out with me.|
|Caroline: It is very frustrating! I’m very slow at processing things like learning new things. It takes me longer to learn them. And that is aggravating! I can’t drive yet and I hate that. It’s hard for me to learn to drive. I haven’t been able to get the kind of job I’ve dreamed of. And I always wanted to go to college and keep up with my age group but I can’t. I can’t go live on my own. My parents have kept me kind of enclosed with is frustrating because I can’t keep my life in control my way.|
Is there anything you wish you could do but cannot because of SLOS?
|Amelia: I wish I could get a job like other people can. I wish I could follow my dream to be an actress or singer. I want to work with fun people. But I’m most passionate about getting a place of my own and having a driver’s license! I would drive to tennis everyday! I would like to travel to London!|
|Caroline: First is driving, then college, and then living on my own. I just want my freedom without my parents worrying or being a little nosey.|
Do you think it’s helpful to have a sister who also has SLOS?
Do you lean on each other for help?
Amelia: I think so because we can relate to one another. We both have the same issues like having a hard time learning. I do think we lean on each other. Caroline helps when I struggle with my speech. Also, we like to hang out together since we don’t have many friends.
|Caroline: Yes, to kind of help you go through all of this. Yeah, we do lean on each other but it depends. We are opposites but at least we agree on some things and we hang out together. We work better together when mom and dad aren’t around.|
What does SMAC mean to you?
|Amelia: This new company gives me an opportunity to have a job and it be something that I’d love do. Compared to trying to get a job at a boutique where I always get turned down. Working with Sarah and Mary Caroline, they will let me have a voice. They will listen to me. They believe in me and that’s a powerful feeling. I’ve always wanted that my whole life.|
|Caroline: It will give me my dream job that I’ve always wished for! I just love clothes and making outfits work. Having a cool creative side. My personality can come out more. I’m starting to feel good in my skin.|
What do you hope to get out of being a part owner in SMAC?
Amelia: This will allow me to be able to live on my own. Also, I would be living my dream through being a part of SMAC. I will get to collaborate with other people. I could be successful. I would be proud of the job I would have.
Caroline: It will feel good to be a part of a company with my sisters! That I am accomplishing something I love to do. I want SMAC to be successful because I want to be successful. I want to feel good about working hard and to be proud of it. I could finally live on my own. I want to make new friends. I’m afraid I’d still be in the brokerage company because it’s hard to get a job when you have SLOS. I wouldn’t be able to show my creativity.
What would you say to other people who have a syndrome that affects the way they live?
Do you have any advice for them when it comes to getting a job?
Amelia: Not to give up. Keep encouraging them to do the best they can in life. Get with good groups like my church group. One day you will find someone who will help you, believe in you and give you confidence.
|Caroline: Find a research study to help you understand your syndrome. Study up on it as much as you can. Don’t stop believing in yourself. There is always a light at the end of the dark tunnel.|