{"type":"rich","version":"1.0","title":"One Pound, One Fight: Ruthee's Journey with Kabuki Syndrome","description":"Tonight, you’re going to meet a little girl who has been fighting since the day she entered this world.\n\nRuthee was born weighing just 1 pound, 6 ounces. She spent 284 days in the NICU, and there were times her mom, Holly, didn’t know if her little girl was going to survive.\n\nToday, Ruthee, who is a twin, is four years old and living with Kabuki syndrome, a rare genetic condition that has affected multiple areas of her life. Ruthee is nonverbal, has faced liver issues, is legally blind and continues working incredibly hard toward walking independently. Beside her is her twin sister, doing many of the things Ruthee is fighting every day to be able to do.\n\nRight now, Holly is fighting for specialized care for her daughter.\n\nRuthee was referred to Kabuki specialists in Philadelphia and Cincinnati. After months of Holly, doctors and social workers working to get everything Medicaid required for the Philadelphia visit, the appointment was supposed to happen this Thursday, August 13th. Holly had to cancel it. As of today, she says the request had still not been approved or denied.\n\nHolly believes specialized care could provide something she desperately needs, care plan specifically designed around Ruthee, where she falls on the Kabuki spectrum and the challenges she faces.\n\nDuring our conversation, Holly said, “I refuse to tell her there’s nothing else we can do. I refuse.”\n\nTonight, you’ll hear this mother tell her daughter’s story herself. This family isn’t asking for money. They’re looking for connections, information & someone who may know how to help them navigate the system.\n\nMaybe you know a rare-disease advocate or you understand Medicaid appeals, waivers or exceptions. Maybe you work with medically complex children, know a Kabuki specialist, or you’re another parent who has traveled a similar road.\n\nIf you don’t fit in any of those categories, what you can do is listen and share Ruthee’s story until it reaches the person who can help. As we have seen so many times before, one connection can change everything.\n\nLet’s help Holly find the right door for Ruthee!\n\nReal stories.\nReal people.\nReal impact.\nNews That Unites!™️","author_name":"The Mark White Show","author_url":"https://audioboom.com/channels/5024444-the-mark-white-show","provider_name":"Audioboom","provider_url":"https://audioboom.com","width":480,"height":95,"thumbnail_url":"https://audioboom.com/i/43782684/600x600/c","thumbnail_width":600,"thumbnail_height":600,"html":""}