Harper’s Story / Harper’s Hope

Harper – a happy, lovable, mischievous 8 year old with a zest for life and family, who also has a rare progressive genetic disease called BPAN, which causes brain degeneration.  This sweet innocent child will likely remain in a toddler state until her teen years, when unfortunately, her disease will lead her to be taken from her family at an early age.

Harper’s Hope – that her foundation, with help from others, can further gene research and therapy to help correct genetic defects such as BPAN, and by extension, potentially thousands of other rare diseases that are caused by gene mutations.

Harper was born, along with her unaffected twin sister Riley, after an uncomplicated delivery on May 6, 2014. She was a beautiful baby who was normal in every way.

Around six months of age, Summer and I noticed that she was a little delayed in sitting up and rolling over compared to her sister. We just assumed two different kids, two different speeds of development. At one year, we realized that the delays were significant, and started to reach out to doctors for some answers, and started down the road of occupational and physical therapy.

We were still confident that delay simply meant delay, and that she would eventually catch up.

Our first real shock came at age fourteen months, when Harper had her first seizure.  She barely breathed and turned blue before our eyes…