All in for Alexis- A fight to cure BPAN

On January 23, 2019 our sweet, beautiful daughter Alexis was diagnosed with a devastating ultra rare genetic disorder called BPAN. It’s a progressive, neurodegenerative disorder that typically occurs spontaneously before birth. The cause is unknown and there is currently no cure.

Learn more about BPAN here: https://www.nbiadisorders.org/about-nbia/bpan

Children affected by this learn typical skills in life, but then lose the physical and cognitive abilities they work so hard to achieve, as they reach adolescent years. Life expectancy is shortened as well.

This year has been a rollercoaster of a ride, and we are so very thankful for family and friends that have been there for us.

Since this mutation was discovered in 2012, about 500 known people have been affected worldwide so although it is still largely unknown, we are still learning a lot about this disorder every day.

Take a second to Imagine your son or daughter who you see as as a strong, independent person only to have them lose many of their abilities like walking and talking. 

Please consider donating. All funds will be going directly to research and desperately finding a cure for this horrible disorder.

Thank you!