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.
At birth, Ryder K Wharton was diagnosed with a rare condition named VLCAD (Very Long-Chain Acyl-CoA Dehydrogenase-Deficiency). VLCAD deficiency is a rare condition in which the body is unable to properly breakdown certain fats (called very long-chain fatty acids) into energy, particularly during periods without food (fasting). This is a condition that Ryder will live with as it is a genetic mutation.
For the first six months, it was required that Ryder be fed every two hours. She was given a special ordered formula and prescribed Carnitine, which she took twice a day. Frequent doctor visits for blood work were done during this period and continue today. As you can imagine, many restless days and sleepless nights riddled Cheyenne’s life. Fortunately, Cheyenne had many helping hands to assist her with around-the-clock feedings, household chores, errands, and other needed tasks. Ryder had to be watched with close detail, and as a family we realized how much emotional, mental, and physical support is required.
If it weren’t for all of the support and love that they were surrounded by, Cheyenne is not sure how they would have made it through this trying period of time. Cheyenne looked for support groups and information about VLCAD and metabolic conditions online, but discovered that the only known nonprofit supporting VLCAD is based in the United Kingdom. Cheyenne also shared her story on her social media accounts and received many messages from families also dealing with metabolic conditions.
Due to the lack of resources and the flood of questions and stories from others, Cheyenne decided to use her influential platform to take a stand on something that was meaningful to her and her daughter's story, pushing forward to create a nonprofit organization with Rage Regardless Ry.