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‘Teen Mom’ Cheyenne Floyd: After my daughter was diagnosed with a rare metabolic condition, I set out to help other families

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  • Cheyenne Floyd of “Teen Mom OG” is raising a daughter with a rare metabolic condition.
  • Her daughter, Ryder, has a mild case, so Floyd has been able to focus on supporting other families.
  • This is her story, as told to Kelly Burch. 

When my daughter Ryder was born, she was perfect. That was a relief, after a pregnancy full of health scares. When a nurse pricked Ryder’s heel for the newborn screening, I didn’t think anything of it. I was just happy to be holding a healthy baby in my arms. 

Then, two days after we got home, I got the scariest phone call of my life. It was the hospital, telling us to drop everything and come back. Ryder’s newborn screening had shown something unexpected, and we needed more testing immediately.

That call was the first sign that Ryder and I would become experts in a condition I had never heard of. 

Getting a diagnosis

At first, doctors didn’t know exactly what was wrong. They just kept telling me to make sure Ryder was eating. Luckily, I was overproducing breast milk, and Ryder was a good nurser. I probably overfed her. 

After some additional testing, Ryder was diagnosed with Very Long-chain Acyl-CoA Dehydrogenase-Deficiency. VLCAD is a genetic metabolic disorder. On a basic level, it means that Ryder’s body can’t properly convert fats into energy. 

To keep Ryder healthy, she couldn’t have any periods of fasting. I had alarms set every two hours, and for eight months Ryder ate whenever the alarm went off. It didn’t matter if she was hungry, if she was asleep, or if I was too tired to see straight — she had to eat to stay healthy. 

By the time Ryder was 8 months old her doctors had good news. She was gaining weight well and had good energy levels, so they determined that she had a more mild case. She started to go longer and longer without eating, and I was finally able to get at least a little bit of sleep. 

Deciding to speak out

That’s when I began to transition out of crisis mode and into advocacy. The first eight months of Ryder’s life were a blur. I was feeding her every two hours, waking her up at night, and worrying about her even in the few minutes I could have been sleeping. I was a zombie. In fact, my sister, mother, and grandmother set up a schedule so that someone was always around because they were worried that I was too tired to take care of Ryder, and myself. 

In those moments, I felt so alone. Even online there were no support groups and very few resources. My heart broke for the parents who were raising children with more severe VLCAD and those who didn’t have the tight-knit support system that I did. 

My family, like many Black families, likes to keep our private lives private. When I told my mom that I wanted to share Ryder’s diagnosis, she was apprehensive. She would rather we just deal with things within our home. But I had a platform, and I was beginning to feel like I had it for a reason.

When I shared Ryder’s diagnosis on social media, messages came in from around the world. Suddenly, it didn’t feel like VLCAD was so rare, and I didn’t feel so alone. 

The birth of a nonprofit

I learned so much reading about the experiences of other families navigating metabolic disorders. Even my family changed their minds. Now they say that speaking out was the best thing I couldn’t have done. It’s so powerful when we share our stories and come together. 

In 2018, I founded Rage Regardless Ry, a nonprofit to help families dealing with metabolic conditions. Back when I was pregnant, when doctors thought something was wrong with my baby, friends told me to “rage regardless.” At my baby shower, people were saying it again and again. Years later when we needed a name for the nonprofit, it was right there. 

I didn’t want to raise money to send it back to a massive hospital. I wanted to put it directly in the hands of families. We help with little things, like bringing in a night nurse to help with frequent feeding or providing support so a mom can have day to herself. Right now, we’re running a campaign to help pay for hospital parking — an expense that adds up quickly and can be a barrier to care for many families. 

We were able to help two families in our first year. In 2020, we were able to help 40. I love to see the organization grow. Seeing more people talk about metabolic disorders, and watching Ryder flourish, has shown me that we can rage on, regardless of what life throws at us. 

Cheyenne Floyd is a cast member on MTV’s Teen Mom OG. She’s a mother to Ryder, 4, and Ace, 7 months. 



Courtesy By INSIDER

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