Our Daughter Died From Zellweger Disorder and We Started a Nonprofit In Her Honor! Ask Us Anything
Hi all! We ( /u/ScheisskopfFTW and I) are back again for another AMA about Lily, Lily's List, and our life and journey of having a medically fragile child and then subsequently how we went on to build our family.
If you would like to check out last years AMA here it is: https://www.reddit.com/r/IAmA/comments/a0mrdg/my_daughter_died_from_zellweger_syndrome_my_wife/?utm_source=share&utm_medium=web2x
TLDR: Lily was diagnosed with Zellweger Spectrum disorder at 2 days old. She was missing a large portion of her brain, was blind, oxygen-dependent, and suffered from constant seizures. We had NO idea that she was going to be born with this condition. We learned that day, she would not live longer than 6 months. We had a long, fulfilling, but stressful and exhausting 5 months with Lily. After she died my husband and I felt purposeless, so we started Lily's List. Lily's List is a nonprofit organization that specializes in sending boxes of items to help families with medically fragile children organize their home lives. None of these items are covered by insurance but drastically change the quality of life for the children at home.
We also learned that this condition is genetic and autosomal recessive. Any future children of ours have a 25% chance of being affected by this disorder. Thus, my husband and I chose to pursue IVF with Pre-Genetic Testing to test to make sure we didn't have another child affected by Zellweger Syndrome. Since then we have welcomed a healthy baby girl into this world, who is a carrier (but not affected) by Zellweger syndrome.
Please ask us ANY questions. No question is off-limits. My husband and I are incredibly open about our life with lily and everything after.
Last year we raised over $4,000 from awesome donors like you on Reddit. This year our goal is to help 20 families by raising $4,500 this giving Tuesday! Donate by clicking the following link: https://lilyslist.networkforgood.com/projects/84968-givingtuesday
Edit to Add:
Our wonderful web developer, who did ALL of our stuff for our website and is AMAZING, reminded me it might be helpful to have our website up here :) haha so here is our website!
if you are a parent in need of a box, please follow this link: https://lilyslist.org/parent
WE HIT OUR GOAL!!! THANK YOU SO SO MUCH REDDIT!!!
We are going to bed for now but will come back in the morning to answer any remaining questions!!
EDIT 3: I was asked to put our Venmo and PayPal up here so here they are.
Venmo: @lilyslist2018 Paypal.me/lilyslist