Okay, I’ll admit it — I’m a bit of a reality TV junkie. So I have been watching Cheyenne Floyd’s journey since her initial entrance on Are You The One? Season 3 in 2015. Since then, Cheyenne has made appearances on a variety of shows, such as The Challenge and, most recently, MTV’s Teen Mom. Now, the Teen Mom star, pregnant with her second child, is using Rare Disease Month to raise awareness of the rare disease community through the “Rage Regardless Ry” campaign. This is spurred by Cheyenne’s journey with her 3-year-old daughter, Ryder, who has very-long-chain acyl-CoA dehydrogenase deficiency (VLCAD).
“Rage Regardless Ry”
On her Instagram page, Cheyenne shared a photo of herself and Ryder, introducing both the campaign and Rare Disease Day, which takes place on February 28. In her post, Cheyenne explains that “Rage Regardless Ry” would, each day, share the story of someone in the rare disease community. If you are interested in sharing your story, you can email [email protected] to be added to Cheyenne’s list.
According to the campaign’s website:
Rage Regardless Ry is a 501 (c)(3) non-profit that takes initiative in supporting the lifestyle changes that come with raising children living with metabolic conditions. We host family & social events to bring awareness to the importance of the newborn screening test and VLCAD.
Cheyenne welcomed Ryder with her ex, Cory Wharton, another MTV staple. Cory, who also has a daughter Mila with his girlfriend Taylor Selfridge, has been extremely supportive of Cheyenne; the two have developed a strong co-parenting relationship. Cheyenne is currently expecting her second child, a son named Ace, with her boyfriend Zach Davies.
During the COVID-19 pandemic, all four have had to enact extra precautions, particularly because Ryder could be more vulnerable to severe symptoms due to her condition.
Very-long-chain acyl-CoA Dehydrogenase Deficiency (VLCAD)
Very-long-chain acyl-CoA dehydrogenase deficiency (VLCAD) is a fatty acid oxidation disorder, part of a group of metabolic deficiencies, which prevents the body from converting certain fats into energy. VLCAD is inherited in an autosomal recessive pattern, meaning someone must inherit one defective gene from each parent. In this case, ACADVL genes cause VLCAD. Because of the genetic mutations, the body does not create enough of a certain enzyme to break down fatty acids. Typically, VLCAD affects both males and females equally. Symptoms generally appear during infancy or early childhood although, in rarer cases, symptoms may not appear until adolescence or adulthood. Symptoms, which are often triggered or exacerbated by illness, fasting, or exercise, include:
- Nausea, vomiting, and diarrhea
- High blood ammonia levels
- Enlarged liver
- Hypoglycemia (extremely low blood sugar levels)
- Muscle pain and weakness
- Appetite loss and/or poor appetite
- Weakened or thickened heart muscle
In some cases, and if left untreated, VLCAD can result in severe complications, including coma, brain damage, and death. However, if detected and treated early, most individuals with VLCAD live long, healthy, and happy lives.