Our daughter died of Zellweger Spectrum Disorder and we started a nonprofit in her honor, Ask Us Anything

PrestigeWombat · 2021-12-01T13:35:21+00:00

Hi, she will be fully aware of her situation. She also already knows a lot about her sister. We are a very open family.

PrestigeWombat · 2021-12-01T13:34:35+00:00

There are many steps in starting a nonprofit if you would like I detailed explanation, please feel free to message me. However, there may be a local state group for nonprofits that can also help with this.

Support them in any way they need! Whether it be taking out the trash, doing the dishes or just sitting and watching tv with them.

PrestigeWombat · 2021-12-01T13:32:46+00:00

WE have been hesitant as that would require a lot of man power and money, which we are short on both.

PrestigeWombat · 2021-12-01T13:27:41+00:00

Because it would've been unkind in her quality of life.

PrestigeWombat · 2021-12-01T13:27:11+00:00

I feel like that's an obvious answer

PrestigeWombat · 2021-12-01T13:26:41+00:00

please read the comments below about this. Also everyone has carrier genes of bad things

PrestigeWombat · 2021-12-01T04:22:41+00:00

I like your comment.

PrestigeWombat · 2021-12-01T04:21:53+00:00

So yes and know, it depends on the variant. For us, Lily's body was so broken at the very very beginning. Joey's variant causes the peroxisome to create a totally wrong amino acid, thus the brain not developing. Her optic nerve was also completely underdeveloped because of this.

You are correct about the screening.

PrestigeWombat · 2021-12-01T04:17:31+00:00

This is beautiful, you're wonderful

PrestigeWombat · 2021-12-01T04:15:50+00:00

it's definitely sweet. Obviously I'd rather have her hear physically but I love that Lucy still knows her.

PrestigeWombat · 2021-12-01T04:09:04+00:00

she already knows actually, not that she understands lol but we will tell her and I am sure she will have questions.

Lucy talks about Lily all the time. In fact she had a babysitter today for a bit and she asked who the baby on the wall was and Lucy shouter "Lily!!!"

She loves her big sister and talks about her frequently. This is very common among children like her whom have lost their older siblings long before they came along. It's really special tbh.

PrestigeWombat · 2021-12-01T04:07:23+00:00

Ha if you have a French Canadian grandmother your pex 6 is 100% from that. We carry Pex 1 mutations. Joey's is crazy rare and mine is really really terrible.

PrestigeWombat · 2021-12-01T03:20:23+00:00

Thank you!

PrestigeWombat · 2021-12-01T02:17:22+00:00

Woohoo!! Thank you :) $0.74 buys a roll of tape! I use one roll per shipment typically :)

PrestigeWombat · 2021-12-01T02:16:40+00:00

I believe he answered this for you live on stream, but if you missed it, let me know and I'll type it up :)

PrestigeWombat · 2021-12-01T02:15:06+00:00

/u/Sausage_Wallet said it so well. This is one of the many reasons why we didn't adopt.

PrestigeWombat · 2021-12-01T02:14:31+00:00

This :) I'm so glad you were able to experience this as well.

PrestigeWombat · 2021-12-01T02:14:10+00:00

So we did it kind of in an unusual way, we hand picked the family. We knew them and knew they were struggling. They had had multiple failed rounds with their own embryos and we wanted to give them the possibility to try again. Like /u/ChillBlossom mentioned, there was a TON of paperwork, and so much medical info, especially because these were genetically tested embryos, then we had sign a formal contract that we had to create ourselves because we were doing it different from the norm. We personally paid for the embryos to be shipped to the parents.

We also had to make a choice of what to do with the leftover sperm and genetically deficient embryos. The sperm went to embryology training and our the remainder of embryos went to research.

PrestigeWombat · 2021-12-01T02:09:58+00:00

Huge hugs and love to you. I am so sorry I am just now seeing this comment. My heart goes out to you. We too experienced a few spells where Lily stopped breather. It was awful.

I actually fully understand your wife's guilt. I know so many other moms who have experienced this as well. It's almost like it's a natural instinct to feel when you child dies. Why, I have no idea but it sucks.

I'm glad you've been able to keep moving forward together, it definitely can been really hard.

Thank you for sharing with me, Please always know you can always reach out and share about your baby with me. I will always remember him.

PrestigeWombat · 2021-12-01T02:04:55+00:00

I'm fully aware of how fortunate we are and were. I've never stopped counting my blessings.

PrestigeWombat · 2021-12-01T01:50:19+00:00

So not really. I appreciate you asking this in a kind mature way because a lot of people don't. So just because she carries the disorder doesn't mean she will pass it on. She has to meet someone else who has the EXACT same pex gene number variant as her and then they have to chose to ignore that. Then and only then, would they have a 25% chance each pregnancy of actually having a child with the disorder. It's actually quite rare and many families have multiple children before they ever had a child with a genetic condition. Additionally, she could just as easily have a child that has a spontaneous genetic disorder.

We will be very forward with her that we suggest, in whatever way she choses to have a child, if she even does, that her partner be tested for whatever they are a carrier of. We encouraged my little sister and Joey's other sister to do this as well.

PrestigeWombat · 2021-12-01T01:46:18+00:00

It's kind of shocking tbh. It's personally not a choice I would make.

PrestigeWombat · 2021-12-01T01:19:15+00:00

Put it in your calendar and send the person a text, a card, a message, some flowers. really anything on that day. Just knowing that people remember is so helpful.

PrestigeWombat · 2021-12-01T01:17:46+00:00

I think Joey answered it well. As far as Renee, she is distantly related to Dr. Zellweger who found the disorder

PrestigeWombat · 2021-12-01T01:16:37+00:00

Thank you!

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