Kinley’s Courage
Kinley is a 4 year old girl who was diagnosed with an ultra rare disease- roughly 100 cases in the world- called pontocerebellar hypoplasias (PCH). She was diagnosed when she was just 2 years old. Kinley was born at 28 weeks, so fighting for her life is all she has known since the day she was born. Initially, her parents thought her developmental delays were related to being premature. Her mom, Kelsey, said she knew something was up, later leading to her PCH diagnosis. Not only does PCH cause cause Kinley both mental and physical difficulties, but tragically, PCH has a life expectancy of anywhere from the perinatal period, to about 20-25 years old.
Kinley and her family lost their home and income at the start of the pandemic. Given their financial debt accumulated from Kinley’s birth and NICU stay, her family didn’t have much of a savings built up to keep them afloat while her dad was out of work, so what they did have saved was completely used up. They now currently live in a church classroom to try and get back on their feet.
This is no easy feat, as they're a single income family due to the extensive care that Kinley needs. She has multiple different therapies to attend Monday- Thursday to help her gain strength and meet new milestones. She also sees her specialist regularly to monitor her progress and any new symptoms she may be having. Unfortunately, her specialist is about 6-10 hours away roundtrip. On top of their daughter’s terminal diagnosis, all of these challenges have been weighing incredibly heavy on her parents. They could truly use a wave of financial help to carry them through this difficult time, even just for a little while.
Kinley has continued to defy all of the doctor’s expectations with her internal strength and determination. Being told she wouldn't crawl, walk, and communicate wasn't an option for Kinley. She works really hard every day to walk and has been working on her Sign Language. Kinley also has an older brother named Jack (5 years old) who she works hard to keep up with! It’s truly an honor to be able to help this sweet and deserving family while also bringing awareness to an ultra rare disease.
Please consider donating $1-5 to this sweet family. A little goes a long, long way when there's so many incredible people coming together. Let’s start their new year on the right foot.
-Taylor