Joia Yarboi, cake decorator in need of support for new wheelchair

Callie Frye, Daily Moth Reporter:
Hi, I had a conversation with Joia Yarboi. She is a cake decorator and would post her work on social media. I enjoyed seeing all of her cake pictures until something happened to her earlier this year. She informed me that she was born with sickle cell disease and dealt with its symptoms and complications.

Sickle cell disease (SCD) causes red blood cells to become misshapen and break down. Healthy red blood cells are round and they move through small blood vessels to carry oxygen to all parts of the body. They usually live for about 120 days before they need to be replaced. But sickle cells break apart easily and die. They typically die in 10 to 20 days. Infections, pain and fatigue are symptoms of sickle cell disease. It is an inherited disease and a person will be born with sickle cell disease only if two genes are inherited – one from the mother and one from the father.

Check out my conversation with Joia.

[interview clip starts]

Callie: Hello!

Joia: Hello! Thank you for having me and sharing your time with me. I’m Joia.

Callie: Can you tell me where you live?

Joia: I’m from Chicago.

Callie: And what do you do for work?

Joia: I’m a cake decorator and pastry chef.

Callie: Very cool. I’ve seen pictures that you post on Facebook, you are an expert cake decorator! We’ll show some pictures.

[five images of cake]

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[Sponsored video from Convo: www.convorelay.com]

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Callie: Can you tell me about sickle cell disease?

Joia: Okay, so you may notice that normal red blood cells are round. With sickle cell disease, the red blood cells are shaped more like a crescent moon. So as normal red blood cells will flow through the body, those cells will contort into that moon shape and “die” early. So when that happens, they don’t flow through your body as they should which can block your bloodflow. It’s extremely, extremely painful. Very bad pain. You need to rest more as a result.

Callie: Is there a cure for sickle cell disease?

Joia: Unfortunately, no. In the past, doctors have done a lot of research but could not find a working cure.

Callie: I understand. How did your family find out you had sickle cell disease?

Joia: After I was born, when I was a baby, I cried and cried. I could not stop crying. My mom saw this and wanted to know why I couldn’t stop. So she brought me to the hospital and the doctor ran many tests. After running a blood test, that’s when they found out that her daughter (me), had sickle cell disease. My mom had a moment of clarity, because she has it, and my dad has it too.

Callie: So that means it’s genetic? Does it run in your family?

Joia: Yes. So I got it from my mom and my dad. With my mom, it “skipped” a generation. She doesn’t have it herself, but her genes carried that trait which both of my parents have. My sister and I both have sickle cell disease, yes.

Callie: Did something happen to you previously where you ended up hospitalized?

Joia: Yes. It started back in January. So I had an infection, plus my sickle cell disease. And when it hit me, I had no idea which it was from. I was feeling this funny pain and it kept increasing. Plus I was having symptoms such as a fever and nausea. Not to mention I was exhausted. I was laid up and feeling wiped out. I decided I had to go to the emergency room. The doctor there knew that I had sickle cell disease. It was determined that I needed to stay at the hospital because a lot of work had to be done to clean [blood infection] and they had to perform multiple surgeries on me. If they’re not clean then they can get worse. So after some time my condition was starting to get better and better, slowly. The healing was slow.

Callie: How long did you stay at the hospital? You first went in January…

Joia: It was January until the last week of May. So from the end of January to the end of May, four months altogether.

Callie: So after arriving home, were you able to get back to your normal life?

Joia: Not quite. I’m still having hip problems, which makes it hard to walk. I have limits with that. Now I’m using a wheelchair.

Callie: I see. Is the wheelchair helpful in getting around your home, and going out? Is it working fine for you?

Joia: This wheelchair is from the hospital, and I use it mostly while I’m at home. Because of this kind of wheelchair, it’s not easy to go out.

Callie: Why is that?

Joia: Because I need help getting out. For example, it’s a lot of work packing up this chair to get it into the car, and then taking it back out. It takes time. My dad and my sister can help me but it takes a lot of time.

Callie: And you can’t always get it into the car, it’s heavy, it’s complex…

Joia: I can’t do it alone. And it’s heavy, yes. Yes, exactly.

Callie: Is that why you need a new wheelchair?

Joia: I need a new wheelchair that is custom made for me. I need one that’s lighter, and can pack up easily. I’m an independent person, I want it to be easy to get into the car so I can go out and enjoy life. I want to enjoy going out! I’m mostly stuck at home lately.

Callie: Wow, so you feel isolated in your home.

Joia: Alone and isolated, yeah.

Callie: And you’ve set up a GoFundMe to raise money for a new wheelchair. So the financial situation, it seems expensive to get a new wheelchair, right?

Joia: Yes, because it’s expensive to buy a good quality wheelchair. The one I have now from the hospital is covered by insurance. But a good quality wheelchair would not be covered by insurance. I need help to fund this, because my finances are tight.

Callie: Understood. I hope those watching this can help contribute to you getting a new wheelchair, so you can go out and live your life and not be stuck at home.

Joia: Yes!

Callie: So you can get some independence back.

Joia: Right.

Callie: Thank you so much for sharing and opening up about your sickle cell disease and teaching us about that. It was an honor to chat with you and learn your story. I know others will feel the same way. Thank you.

Joia: Thank you!

[interview clip ends]

Callie: Stay resilient and hope you get the wheelchair you need soon, Joia.

GoFundMe: https://gofund.me/8ae375dd