Hello, I would love to share awareness about my daughter Tylor's diagnosis after two years of constant hospital visits. My daughter was born on May 30, 2024, and since she has had severe issues keeping anything down. We started monitoring her sugar around three months old, where we discovered she was experiencing hypoglycemia during symptomatic events. Finally, at one year of age, we got a referral to an endocrinologist. The endocrinologist started a meal guide to help maintain sugar levels, which I logged for an additional three months – no luck with improvements. At her follow-up at age 16 months, the endocrinologist ordered a series of tests to rule out diabetes. Tests came back negative for a diabetic diagnosis, and we were sent to a geneticist. The new specialist ordered a full genetic screen, which consisted of taking both parents' blood and the baby's blood and comparing what genes she contained. We submitted labs on December 18, 2025, and received results on February 11, 2026. Tylor has an RFX6 Disorder, also known as Mitchell-Riley syndrome. A study on Mitchell-Riley syndrome showed that 5 out of 9 diagnosed patients pass away before six months of age. There is no awareness ribbon correlated to Mitchell-Riley syndrome, no support pages, and no active awareness. My goal is to raise awareness in the community; our babies rely solely on the parents to be their voice! I am blessed to say that Tylor will be turning 2 years old on May 30th; she is the most smiling child I have ever encountered. Through everything she has endured, she is always the light of the room. I am honored to be called her mother!

For 21 months, I have paid out of pocket for all of her CGM sensors/monitors/testing strips/medical travel. Her insurance will not cover supplies until she is 2 years of age because of FDA-suggested guidelines. If you are reading this and have any access to Freestyle Libre 3 sensors, please reach out we can absolutely use them. As of 2 weeks ago the TCC solinoid went out in my vehicle, unfortuatly KIA has to replace the whole transmission because they cannot replace just the solinoid in these types of vehicles, which leaves the cost of repair at $3,700. She just recieved her Genetic diagnosis last week which leads us to follow up with her endocrinoligist which is an hour away.

If you are unable to donate, please please lift our daughter up in prayer and share our Facebook page: Tri-Cities Micthell-Riley Syndrome Advocacy.