February 2020

"This is our beautiful & comedic daughter Harper! She absolutely lights up the room with her infectious smile, fun loving personality & music has been a very important factor in her life since the day she was born. I began to notice something wasn't quite right about Harper's behavior around 3 months, but it wasn't until she had her first massive seizure at 10 months of age that we really started to wonder what could be causing her to be delayed and bring on such devastating seizures. We spent the next few years trying to get answers as to why she had so many different types of seizures, also why medication wasn't working. She was diagnosed with Epilepsy, Autism, intellectual disability & Developmentally delayed. In April of 2018 we finally got her diagnosis of BPAN ( Beta- Propeller protein associated neuro degeneration). Since that day we have been trying to wrap our heads around her uncertain future. As of now she is a very happy 5-year-old, she definitely has her moments, but we take it one day at a time. She can walk, run, and loves to jump on her trampoline. Harper is non - verbal but with the help of Speech, Occupational & Music therapies she is communicating and finding her words. Although they are not very clear most of the time, she has come a long way. Harper is the light of our lives and we couldn't not imagine living on this earth without her. Until our last breath we will be by her side fighting this fight???? All families affected by these devastating disorders will forever be in our prayers."


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