Help Kaylee and her family

My great niece, Kaylee, is almost 5. Instead of playing and being a kid, she is dealing with a rare degenerative disease called Panteothenate Kinase Associated Neurodegeneration (PKAN)*. 

This rapidly progressing disorder makes it increasingly difficult for Kaylee to control her body movements. To add insult to injury, PKAN does not impact her ability to understand the world around her so she is literally trapped in her own body. Kaylee is no longer capable of independent walking/crawling or speech. She is a bright and happy PKAN Warrior who puts a smile on the face of everyone who meets her.

Kaylee recently had to get a permanent tracheotomy to help her breathe. She has been in the pediatric ICU since January 8th due to complications. 

As if that wasn’t enough, Kaylee’s mom, Stacey, is a furloughed government employee who is not getting a paycheck due to the shutdown. She is the primary breadwinner for the family. 

Kaylee’s dad, Mike, is a stay at home dad. He provides all of Kaylee's complicated medical care while also caring for her younger brother, Nicholas. “Nickels” has been going to daycare while Kaylee is in the hospital so Mike can spend time with Kaylee in the hospital. Mike is also facing his own medical expenses related to eye health due to the increased stress the family is under. 

Please consider helping their family with living expenses such as food, utilities, and transport costs incurred during Kaylee's hospital stay and the shutdown. The shutdown has taken away the family's primary income and added more financial stress and worry to an already complicated hospital stay. 


*Learn more about PKAN here:  

https://www.nbiadisorders.org/about-nbia/pkan 

http://nbiacure.org/learn/nbia-disorders/pkan/classic-pkan/