Our daughter died of Zellweger Spectrum Disorder and we started a nonprofit in her honor, Ask Us Anything
Hi Reddit! We ( u/ScheisskopfFTW and u/PrestigeWombat) are back for our 4th AMA about Lily, Lily's List, our life and journey of having a medically fragile child, having to be bereaved parents, building our family to have a non-affected child that became successful, and how Lily's List has done during the COVID-19 Pandemic and beyond.
As we mentioned, this is our 4th AMA. If you would like to read the previous AMAs, here they are:
Third Official AMA:
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 ensure 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. We now have a healthy, unaffected daughter.
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.
Joey will be live on twitch at https://twitch.tv/sharethelight if you would also like to chat with him there!
Our Website, which was developed by a wonderful Redditor that found us on our first AMA, is (www.lilyslist.org)(Website has been fixed, once again I am forever thankful for the individuals who have found us through reddit)
If you would like to donate for Giving Tuesday there are many ways to give, you can visit us at (please note I am putting these here now in advance because I was asked to do so because last year I did not) :
Our Official Giving Tuesday Donation Page: https://lilyslist.networkforgood.com/projects/147719-giving-tuesday-2021
Amazon Item List to Donate items to Lily's List Love Boxes: https://smile.amazon.com/hz/charitylist/ls/1OHXXV3GHIJHZ/ref=smi_ext_lnk_lcl_cl
If you would like merchandise that was also created and has continued to be assisted by another wonderful Redditor that discovered us from an AMA you can do so here: https://www.bonfire.com/store/lilys-list/
3 Years Ago we raised $4,000, 2 years we Raised $5,000, last year we raised $11,000, and this year, we have a goal of $10,000 because of COVID-19 (it's STILL GOING) we have families being pushed home FASTER and WITHOUT nursing staff, this means they need us more than ever. We are so EXTREMELY thankful for the unwavering support that Reddit has provided to us over the years and we are so excited to be here again on GivingTuesday and cannot wait to see what questions you bring us this year!
For the second year in a row, Joey (Lily's dad) has subjected himself to some really fun fundraising goals: https://imgur.com/nAp9W1U
All of these achievements will be filmed live and you can view the goals live on twitch or Instagram or FB.
Let's Do This!
If you are a parent and you and your child is in need of a love box please visit: www.lilyslist.org/parent
to fill out a box request. Please note if you are having a hard time submitting the form you may need to rotate your phone into landscape mode.
Once again we are here to remind you, PLEASE ASK US ANYTHING and NO QUESTION IS OFF LIMITS! We have said this time and time again, and we love how curious Reddit is, and this is why we come back every year to do this. We want to share our story about Lily, Lily's List, and our life beyond.
Proof was submitted via Scheduler.
WE HAVE HIT OUR FIRST GOAL! $2,000 until Joey has to do the TARKOV gross food taste test.
WE HAVE HIT OUR SECOND GOAL of $4000! Tune into IG, FB, or Twitch to watch Joey eat some video game based food! (if you would like to see the video, they are posted on IG!)
Edit: I have to go teach swim lessons for 3 hours but I will be back!
I AM BACK