On Aug. 18th 2014, Baby Rylee Ruth (RyRu) was admitted to CHOC hospital after being home for only 4 days for lack of bowel movements. Since the hospital was able to remedy the problem within 7 hours, her parents thought they would be home in no time. They soon found out that she wasn't breathing well and with what seemed like a blink of an eye, was diagnosed with Congenital Central Hypoventilation Syndrome (CCHS) and an MRI and bloodwork were ordered followed by a tracheotomy to keep her breathing. This syndrome, which is a disconnect between her brain and her lungs, is very rare and could effect other parts of her as well. Not a lot of research has been done since there is only about 1000 known cases in the world and with that she is being monitored by a variety of specialists. She is currently in the NICU at CHOC recovering and getting used to the trach and being on a ventilator.
Her parents, we recently lost her identical twin Ava Mae, are wanting some sort of service for her and need help to do so. Once Rylee is able to come home, nursing care will be needed daily as well as a ton of equipment and supplies. Medical Bills are piling up every day and they are having to take a lot of time off of work to take care of her. Mom and Dad are currently learning from the staff at CHOC on how to take care of their little Rylee.
This is the start of a long journey for this family. Everyone's been asking how they can help. First and foremost PRAYER, let's surround this family with love and support and PLEASE donate to this account and post to anyone you know who can help as well.
- Larry Babcock
- Kathy Cloud
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