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 3rd 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.
Like we mentioned, this is our third AMA if you would like to read the previous AMAs here they are:
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. 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, who was developed by a wonderful Redditor that found us on our first AMA, is (www.lilyslist.org)
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/116153-giving-tuesday-2020
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/
Two Years Ago we raised $4,000, Last Year we Raised $5,000, and this year, we have a HUGE goal of $7,000 because of COVID-19 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!
Lets 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.
I Have been reminded to add (by some kind friends) that this year we have some fun giving goals: https://imgur.com/a/INrNs4o these are all being filmed live. so far we have raised $7300. You can view the goals live on twitch or Instagram or FB.
Second Edit: WE will be answering questions until 10 pm and then we will come back tomorrow for anything else :)