My daughter died from Zellweger Syndrome. My wife and I are here to answer your questions about our experience and our non-profit Lily's List. AMA!
Hello everyone. In conjuction with Giving Tuesday my wife and I have decided to hold our second AMA. Our daughter Lily was born with a rare genetic condition called Zellweger Syndrome. The condition left her blind, mentally retarded, and epileptic. My wife and I became fulltime caregivers for almost five months until Lily ultimately passed.
In Lily's honor my wife and I founded a Non-profit organization named "Lily's List". Our mission is to assist parents and caregivers as they transition home from the hospital. We accomplish this by providing small items that insurance often won't pay for. Our "love boxes" make the caregiver's day a little bit more organized and hopefully easier. Below are only a few of the items we include:
Specialized surge protector for the numerous monitors and medical equipment
A whiteboard for tracking medications, seizures, and emergency data
A wall organizer for random medical equipment
Cord wraps for easy transportation
Taylor and I are happy to answer any questions regarding our experience or Lily's List. No question is off limits. Please do not hold back.
Edit: Taylor and I are going to sleep now but please continue to ask questions. We will get back at them tomorrow. :) Thank you everyone for your support!