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

In one of your last AMA’s you mentioned that no one asks how you’re doing. So i want to ask you how are you both doing, now?

Wow thank you for noticing that. I'm actually doing really well. I have been working really hard on letting myself feel more emotions. And it's really had a positive impact. I have good days and bad days. No one remembered her death anniversary this year (aside from my parents and best friend, who is also a bereaved mother) and that SUCKED hard. Joey is doing ok. He struggles a lot more with depression than I do and every day is a battle for him but I'm proud of him for continuing to push forward.

I remember people on their death dates, but apparently this isn’t as common as I thought at least in the US. Remembering people exclusively on their birthday is more common… perhaps it has to do with people wanting to distance themselves from death.

I'm guessing so? It totally sucks

I agree. Death dates are much harder to remember. People want to remember them by the life they lived (birthdays) than the end. I wouldn’t take it personally if possible.

I keep a sticky on the charts for all my patients who have lost a loved one with the death anniversary (often I was their doctor too) so I can talk with them about the person who passed around the time they passed. It is also for me since we can share stories and while the impact on my life is less I miss the person also.

This is beautiful, you're wonderful

What can we do to acknowledge death anniversaries? I'm always afraid I'll make things worse or painful, so I do nothing, even though I know that it probably painful too.

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.

What do you include in the boxes given out? Donated btw ♥️

Thank you :) These are what we include in the boxes and each parent gets to choose what they would like.

Love Box Items

LABEL MAKER: to label organizers, whiteboard, and supplies.

CLOCK: to help nurses and parents accurately chart without searching on a watch or phone.

WHITEBOARD: to keep track of important information for nurses, doctors, and parents.

SURGE PROTECTOR: medical supplies need to be grounded to protect the child.

SET OF STRAW BRUSHES: cleans out gtube, trach, and oxygen tubing, as well as syringes.

BOTTLE WARMER: warms up food for child, most NICU and PICU are equipped with one.

SHOE ORGANIZER: hanging door organizer to organize all the supplies the child will have; gauzes, tubing, syringes, etc.

SET OF CORD WRAPS: to organize the different cords that the child will have.

FILE FOLDER WALL ORGANIZER: keeps medical documents and important documents organized.

GRASS DRYING RACK: a designated space for family to dry child's supplies.

BOTTLE BRUSH: cleans larger areas that the straw brushes can't.

GTUBE FEEDING BRUSH: for children who have g-tubes; these are great for cleaning out their gtube connectors as they get incredibly sticky and sometimes clogged. This helps prolong the life of the connect. It is more flexible than the straw brush cleaners.

My wife would of loved this. Last year our youngest daughter was treated for a brain tumor, so they were gone for 7-10 days at a time for half of the year for radiation or chemo.

We did connect with Baxter's Smile Box which is for the kids, but maybe y'all could connect with them to reach more families?

Awesome work and sorry for your loss.

I'm sorry you when through this!

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Thank you for the recommendation, I will definitely reach out to them!

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Thank you for taking the time to read and comment.

My son had Zellweger's too. He had the most severe form of it. He made it to 7 months. Longer than predicted. I like to think it was because of my family making him happy.

Even with all the feeding tubes and all the work taking care of him. I would have chose to have him stay with us like that forever. He was such a source of joy and love in our lives. It's hard to explain, but he was warmth.

A few times in the months before he stopped breathing a few times. A really terrifying experience. Once I thought he had died, he didn't breathe for close to two minutes. I had almost given up when he suddenly took a big deep breath. The same thing repeated a few times every week or so until finally he didn't breathe anymore. I'm just glad he didn't die in his sleep. He died in his mother's arms, my whole family there.

I spent every moment I could with him and I loved him so much. My parents helped so much too. My Dad spent so much time cuddling with him on the couch. My Dad was terminally ill for years but had always been so stubborn that he barely seemed sick. After my son died his health declined fast and he died six months later.

And it hasn't been easy since my son died either. My wife and I almost split a few times. Somehow we're still together, but we're making it work. The sad thing is is, or one of the sad things is she blames herself for his death. It doesn't make sense but there's no talking her out of it. No matter how many times you explain how the genes work and how it's a random unlucky coincidence that we both had the gene. It doesn't matter. In her mind it's her fault that he died and I think she'll always believe that.

Anyways, just a part of my story that I wanted to share. He'll have been two this December I can't believe it. I'm crying typing this. I don't really have a question. I just felt like sharing.

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.

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

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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.

First of all, so sorry for your loss. That is so heartbreaking.

My question is, Does your daughter have a high risk of passing this on to her kids?

So she is only a carrier, so unless she meets and conceives with a partner that also carries e Pex mutation, they will be fine. However, we will encourage carrier testing for whomever she choses to have children with.

Were the IVF folks unable to secure a non-carrier? Or do they strictly screen out homozygous affected only?

We had to boys that were noncarriers. We chose to have another girl. I've understand that it is controversial, however she will be made aware of the situation.

What is your plan for those embryos? Carry, donate?

I’m an IVF mom. I can’t imagine going through infertility and then finding out something so tragic when you finally give birth. The NICU was hard enough but at least he’s healthy now. I’m so sorry for what you went through.

❤❤ hugs. We have already adopted them to another family :) in hopes that they can build theirs. I am so glad your baby is healthy.

this is really cool, do you mean that you put them up for adoption as frozen embryos ready to implant into their new mother's uterus? I have never heard of that type of adoption. how does it work exactly?

We did this with our leftover embryos. We ended up with 5 but are firmly one and done, so the other 4 were donated anonymously to our IVF clinic.

Both parents have to fill out a bunch of forms with your medical history and grandparents' history. Also height, hair and eye color. And some personal questions about hobbies and personality. It also let's you check the option to let the child contact you when they turn 18, and a personal message for thd child and the new parents. It was very surreal thinking about it all. I love the idea that my daughter might have a sibling out there somewhere. And I LOVE the thought that I could have helped a family struggling with infertility, since I know how devastating that is...

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

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.

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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.

Is there a reason you wanted to have a biologically-related child as opposed to adoption? I have disadvantageous genes and have decided to adopt instead of passing those traits on - what parts of your life influenced your decision? (Not judging, genuinely curious)

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

I remember reading some of your previous AMAs - thank you for sharing your story and your work!

Looking back now, are there any particular things that medical professionals said or did that have stuck with you (in good or bad ways)? For those of us in medicine, do you have any advice on how we can better care for families like yours?

Oh man this is one of my favorite questions. I feel like every year something different comes to me. I had one particular nurse who I will never forget. We were leaving the NICU one day and he came running after us with tears in his eyes. He had a daughter that died as well. He told us to cling to each other. To lean on one another and never let go. If we did that we could make it through anything. I tracked him down 8 months later when I was going through IVF at the same hospital to thank him. He told me that he was just doing what he was called to do. I will never forget that day.

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I distinctly remember telling the Geneticist that Lily was going to do something with her life and instead of laughing at me or telling me to "just go home and love on her with the time you have" (this is a common statement) she told me "I firmly believe that she will do great things"

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Have faith in the parents. If it's a condition that you are unfamiliar with, I guarantee this parent has done extensive research. So listen when they ask about doing something new or different. They have nothing to lose and being seen as a valid individual in their child's life is huge. We were so fortunate to have doctors who treated us like real people instead of idiots who didn't go to medical school. This was SO IMPORTANT.

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sorry for the word vomit.

If you're interested, there's a very good book by sociologist Amanda Gengler called Save My Kid, and she looks at how parental advocacy works in hospital settings for parents with critically ill kids. I think you'll find it pretty validating.

Wow, that sounds wonderful! I'll definitely check it out!

You were right. Lily is helping kids every day, that little baby girl is saving the world. 💕

Thank you!

1st. Death of a child is one of the most consistent markers for a divorce. Y'all have seemed to overcome this and refocused your lives.

Do you feel this is a product of y'all's relationship, the immediacy of Lily's condition or a bit of both?

This would be helpful insight for many grieving parents, I imagine.

2nd. When do you feel it is the right time to talk to your daughter about her genetic risk with children? It feels like it'd be more existential than just an addendum to the 'birds and the bees' talk.

1. Great question. Joey and I started dating when I was 14 and he was 15. So we had just about 10 years under our belt by the time Lily even came into the picture. We had also gone through almost 2 years of not being able to conceive. It was HARD on us. I honestly think because we literally grew up into adults together and were very open about everything, gave us the ability to stay together. We were in counseling within 2 weeks of Lily being born and this helped so much. It taught us how we grieve differently and that's ok, that is was ok to be angry, etc. We truly leaned into each other and tried to find something positive each day.
2. We are VERY open to Lucy about her sister and that she is a science baby. So I'm assuming we will have the conversation multiple times in age appropriate language. She's a very curious child so I assume she will have lots of questions.

Having a child with a terminal illness and having hard time conceiving frequently goes hand in hand (which makes it doubly cruel). Because with many disorders it's rarely a live birth and instead either a non-viable egg or a miscarriage.

Had a neighbour that only had daughters (and that after a lot of trying). Didn't find out until her eldest daughter had a son with a terminal illness that she was a carrier of a gene where it will most of the time prevent a male fetus from surviving (and if they're born it's terminal within a few months).

I'm so sorry they had to experience that. It's incredibly challenging.

I remember reading your previous AMA! My niece (also named Lilly) who I am very close with was diagnosed with Zellweger syndrome a few months after birth, she was given a life expectancy of 3 and is approaching that age. The death of a child is extremely difficult and I would like to do as much as possible for the family during this time. So what sort of support from family and friends was most appreciated or helpful?

I am so sorry to hear this. I am so glad she's been with your family this long so far! The most helpful thing for me was people who didn't have expectations on me and what I were to act like. Friends who went with me to do "normal" things were so helpful. Being able to find some sort of routine after was also helpful. But most of all, it's the people who keep checking in even three years later. She's still part of our life and the people who remember that mean so much to me.

I’ve tried to visit your website but I keep getting an error message saying the connection isn’t private?

I have message our wonderful web developer, it looks like our certificate expired.

Oh dear! Thank you for the heads up let me see if I can fix that!

Hi Dad here! Happy to answer questions?

For a lot of us who have had grief in our lives - whether loss of a child or something else similarly world-shaking - it's hard to just put on pants in the morning and get through the day. It takes really fucking special people to turn pain into purpose.

When you talk to other parents going through what you did, does it bring any of your own personal pain back to the surface? Or has it achieved the opposite effect and allowed you to focus pain that would be there anyway into something helpful?

Sending you both all the respect in the world for what you're doing.

This is a wonderful question. Both Joey and I agree that it's still horrible all the time, but knowing that someone else's life doesn't suck as much, is so worth it.

How was the chip challenge? Haha

We haven't hit it yet, want to make it happen?

What was your happiest memory you guys both have with your baby!?

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

I have kind of a rambling question.

It's been almost 20 years ago now that a co-worker went through the death of her medically-fragile baby. I don't remember the details of the baby's condition, but at the time I helped her research and listened to her as she made the decision to carry to term, knowing the baby would be affected. He was born on the best possible side of a bad continuum. Things were going relatively well until he caught influenza. He died while at the pediatrician (which was a blessing - - they knew the CPR was is knowledgeable hands). I was driving her to the hospital to meet the ambulance when she got the news the resus was unsuccessful.

She was very angry at me afterward, especially because I shared information about her baby's genetic condition as part of the email I sent out to coworkers about the situation and memorial. It never occurred to me that information was private and that she wanted the baby remembered "without flaw" if you will.

I still honestly have trauma from this all these years later. She was a good friend. I covered her job through all three of her pregnancies, which was not an easy thing. She has not talked to me since.

I guess the question is: does grief go awry with these situations? Is it normal for someone to focus their anger on an individual? Or was my screw up truly so irredeemable that her anger was justified?

So grief can definitely make you feel emotions that aren't totally normal for you. I was REALLY angry at people for really simple things for a long time. I even got mad that people gave me the wrong support, it's not logical but it's the truth. I would get upset that people said I "lost" my child, not it doesn't bother me. Sometimes, you end up channeling your emotions at the wrong people. It's not intention but it happens. If you have any connection to her, I would reach out. She may have the ability now to know that what you did was not malicious.

As a parent who has gone through this, if the testing had been able to detect this early, do you think you would have considered an abortion?

So I kind of answered this question above, but tbh I don't know, now yes but before, I don't think I truly understood the magnitude of a situation like ours until it happened.

I see your charity is listed on smile.amazon.com.

For everyone that uses Amazon, if you order through smile.amazon.com you can select a charity and Amazon will donate to that charity a small percentage of all of your purchases.

It's not a lot, but if enough people use the service, it can raise a substantial amount of money.

Now for a question - how much time does it take to run your charity and how difficult was setting it up?

My daughter has Pompe Disease and I've often thought of starting a charity with more of a focus on research than other available charities.

THANK YOU! We honestly make quite a bit from Amazon. It seems our supporters have some shopping problems lol jk :)

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It takes quite a bit of time, like I had to call off work today to do this. It wasn't very difficult setting it up, BUT it's a lot to maintain. It takes energy I don't always have and a LOT of money.

Is there a way to do this through the app?

It looks like once you set it up on the app, the app will automatically use smile.amazon.com.

Looking on iOS, I opened the app and scrolled to the bottom where there was a "Settings" drop-down. Under "Settings", there's an "AmazonSmile" option - there you can select the charity and see how much you've donated.

I'm not sure if it's the same on Android, but I bet it's similar. Maybe someone else can chime in.

WOOOOW just checked mine on Android and apparently you have to set it up for both browser and app purchases. 7 eligible purchases, $0.74 total. God damn it.

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

Such an odd name, you wouldn't think a "disorder" would be so fatal. How much is known about the cause and is there a way to treat it if its caught early?

Hi! So this condition is a spectrum disorder so every individual is impacted differently. Unfortunately there is no way to treat it. You give the individuals all the opportunities you can to improve their quality of life. As of now there is a lot of research going on in drug trials to help slow or reverse the aspects of the condition.

Thank you for your kindness. You are both incredible ❤️

What words did/do you find comforting when dealing with the grief and pain? How can I best comfort others who are going through similar things?

Hi! Thank you! I think every person is truly different. I hated being told that people were "thinking of me and sending prayers" I really appreciated people who let me just talk, share, or even just sit with me. I also had a hard time when people asked me what I needed. I had no idea lol I'm sorry that isn't more helpful.

This is such crazy timing, I literally just found out I am a carrier of Zellweger Spectrum Disorder this morning.. My wife and I are going through IUI/IVF now after years of trying unsuccessfully. She is not a carrier so we are thankful there is no real concern for us. I am so sorry to hear about your loss, after reading about it a little this morning I would never wish it on anyone or their children.

What are the ultimate goals of your nonprofit? Is it primarily to benefit the families who have lost their children or funding towards research, providing genetic testing, or something else? What are the chances or fixing something like ZSD using a gene editing technology like CRISPR or is it just simpler to select with IVF?

WOW that's wild! Welcome to the club haha. I truly hope your endeavors are successful.

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The ultimate goal is to help families get home and organize their lives. We have one mission and that is it. There is another organization called the GFPD that funds research, support, etc.

They definitely are working on CRISPR but it's going to be many years before that happens.

If you guys were able to exceed all your fundraising goals, are there more items or different types of support you’d like to start offering?

So we stick to our designated program because we have found that you can do one thing REALLY well or do multiple things just ok. The more we fundraise, the more we can send out. We would really like to start working directly with hospitals and more money would give us the capability to do that.

If you had known ahead of time that she would be born with this condition, would you have had an abortion? What do you think of abortion laws that would have prevented you from getting one even though you knew your child will be born with this condition?

Oh gosh, this question is always really hard for me. Before Lily I honestly probably would've said no, I did not know what it was like to live with a child who would die. I don't regret my life with her and I would do it again honestly. BUT the reason why we chose IVF was because I didn't want to have to have an abortion.

I personally am FURIOUS with the abortion Laws that have come out. For many people, their only way to build a family is through natural conception, with the option to have an abortion. While I never wanted to have to make that choice (I went to great lengths, I even had a hysterectomy when Lucy was 18mos), others should absolutely be given that choice. Not just for genetic conditions like ours but so many others.

Is there any info on if this disorder is more common amongst certain ethnicities/regions/ whatever else?

I've never heard of this disorder, so thanks for doing this AMA.

Hi yes! There are a few that have if more heavily, French Canadians and Ashkenazi Jews, however it is truly spread throughout the globe. There are individuals impacted from Russia, to the UAE, to all over the United States.

Will you have a talk about the effects of Zellweger disorder with your daughter when she's older in case she wants kids of her own?

We absolutely will! I not only want to teach her inclusivity but an understanding of situations like ours. I don't blame my parents, they had no idea and it wasn't discussed as much when we were kids, but I will make sure Lucy knows.

Lucy and Lily 🥺

We wanted to honor lily in some way with her sister.

What was your favorite part about your time with Lily?

Oh man, every day with her was wonderful but the day we took her to the beach was amazing and just hanging out with her, listening to jazz was the best.

As terrible as it sounds I am terrified of having a child that is medically fragile and the financial ramifications of it. I see so many stories of babies in the NICU with the parents left with tens of thousands if not more in debt, even with insurance. Or parents that have to declare bankruptcy. I am currently pregnant and just so scared that if anything goes wrong how not only emotionally but financially we would be impacted.

All that to say, did you all incur huge debt/hospital bills?

Honestly, it's a legitamate fear. It's terrible, that's why we and other organizations have been created. The Collette Louise Tisdhale foundation is amazing at providing monetary support for NICU families.

We are so very fortunate that my husband was in the Marine Corps at the time Lily was born and she was born at a Naval hospital, therefore we didn't pay a dime for her care. But I know for a fact, we are very much extremely lucky for our situation. Most don't get that.

Why didn't you consider adopting I stead of creating a child that will carry on this horrible disease?

first off, we all carry horrible things. It doesn't make her different. Second off, people severely misunderstand how difficult, time consuming, and expensive adoption is. Also, I have every right to want my own biological child. Additionally, there is no way to know what you are getting when adopting a child. They could end up with a terrible epilepsy condition that hits when they are an older child. You just don't know. So you make the choice that is best for you. That's it.

Hi guys!! What were the steps you had to take to start a non-profit? It sounds like such an overwhelming process, especially when grief stricken. Love y'all! <3

Hey Love!

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Oh gosh there are a lot of steps. And I would not have been able to do it without the help of wonderful friends that I met in person and on Reddit. The first thing I was told to do was reserve the name in the state of California. Then I did articles of incorporation and got our EIN. Then I established our filing with the IRS. It was shockingly easier than I thought it would be.

I see that your organization is set up as a 501(c)(3). How much work was it to establish the charity and obtain 501(c)(3) designation? And generally speaking, how much work is involved on an ongoing basis to administer the charity, e.g., paperwork, reporting, board responsibilities, and any other requirements to maintain 501(c)(3) status? I ask because I was recently involved in setting up a charitable fund in memory of a loved one who passed away from brain cancer. Our funding goals are similar to yours and, at that level, we decided to organize as a donor-advised fund instead of an independent 501(c)(3) (while keeping open the option of converting to a 501(c)(3) at a later time).

It was definitely a lot of work. However, because we have only one program/mission. I think it is easier. It's a lot of work to keep everything going. We do everything through volunteers in efforts to keep costs low. I am fortunate enough to have an extremely flexible profession that I dedicate every Friday to my efforts. Donor advised funds are definitely easier. Honestly, the hardest part is social media. It's draining and time consuming.

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Oh lord that's a loaded question. I would've fixed lily. and then still had Lucy despite only wanting one child because they are both awesome, I would love to have a grant that funded lily's list with three years program expenses because then I could do so much more out reach, and then have my student loans paid off because then I could work part time and focus more on Lily's List.

Can i just give you props for your awesome marsupial-themed username?

Thank you!

why was it so important for you to have biological children? even if your child is only a carrier it doesn't mean that other descendants of yours won't be affected.

Unless they continue on and on without checking their partners, it's really not an issue. I wish I could explain the need after going through infertility, miscarriages, and then having my baby die, why I needed my own child, but it's the truth.

How long did you try before Lily? My wife and I have been trying for almost 4 years and have had 4 miscarriages. Farthest along was diagnosed with turner syndrome and was not viable

We are looking heavily towards IVF but unsure how much is too much emotionally

Goodness I am so very sorry. We tried for 18 months before we used Clomid. My body had crappy eggs and we didn't know it until IVF.

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Honestly, and this is not the case for everyone, but IVF was so much easier on our relationship and myself emotionally than traditional TTC.

How has COVID impacted your operations? Is there anything y’all have had to change because of it? Any extra costs added?

COVID has impacted things tremendously. It has actually increased our amount of individuals needing support. Additionally, costs have gone up extensively. As well as the ability to get supplies. We used to pay 15 bucks for a label maker, now it's 25 and i have to buy them when I see them and order items from 5 different stores simply to get enough stock.

I too am a web developer and would love to lend a hand if needed. Free of charge. This is a wonderful non profit and while I've never had an experience with zellweger syndrome I still want to help. Is there anything I can do to assist here?

Thank you so much! Do you mind sending me a message with your email and we can chat :)

This must be very hard to have a child die, but at the same time, perhaps you're better off this way.

This might sound mean, but from experience, having the child survive can just prolong your own suffering.

I have a kid with some small and rare genetic issues, one of which usually results in very bad things. I don't want to give too much detail, but they're really nasty. We also found out a few months after he was born and it resulted in a few years of constant worrying and anxiety and just waiting for him to get worse.

Except he never did and we still don't know why. Nobody knows. Now we're waiting for the next brain MRI to tell us if his brain is still developing normally or not. So I'm still wondering if we hit the genetic lottery (the only known case of someone having this genetic duplication not being affected by it) or is it just delayed for some reason, and one day he will suddenly start to just degrade?

it's hard to start healing when you're stuck in limbo with no closure or no real answers.

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As far as questions are concerned: don't you find it a bit mean to name this disease after Renee Zellweger? I mean, she just has a funny face...

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

Maybe this was answered in past AMA’s but how did you manage healing after the loss?

We lost a baby due to Holoprosencephaly but the hospital pressured us into aborting the pregnancy at 20 weeks. To this day we wonder if we made the right choice, our therapist says everyone in this situation wonders if the grass is greener.

But I felt like a part of me died that day and it was unspeakably painful to try and function plus go to work etc. It didn’t feel like anyone understood at the time.

Do you still honour her birthday every day? We try and do that each year. My wife even did some image trickery to see how he’d look like if he had survived:(

It doesn’t hurt as much it used to, I couldn’t look at the pictures for years.

Anyway cheers, you’re very inspiring!

Ugh my heart hurts so much hearing this. I am deeply sorry you had to go through this.

We honor her birthday every year. We do something for Lily's List and something outside, even if it's February. I think it's crazy important to celebrate them every year.

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Hugs friend.

How do you feel about how the doctors handled the situation right after Lily’s birth (in terms of things like their knowledge, their ability to inform you, support you, etc.)?

I want to thank you and admire you for the strength you have found to share your experience like this. As a medical student years ago, I had to counsel some families with this and related disorders, and the experience has never left me. One of the most heartbreaking aspects on my end was my inability to be able to give the families enough information about how they were to survive let alone thrive with this shocking change to their expectations for their new family. Sharing your experience and creating Lily’s List are invaluable. I am sorry you were dealt these cards, but you have created an amazing tribute to Lily and are helping so many people. Just wanted to send you love from an internet admirer. ❤️

I felt really lucky tbh. After talking with so many other families, our doctors took the time to research the condition, read all the literature that was out there and truly listened the us as well. I truly believe that because they did this, we felt more confident as parents but also, Lily had a better quality of life. There has been tremendous research done on this disorder and often doctors ignore it simply because the child is dying, but quality of life is still crucial, even if their life is short.

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Thank you for your kind words, they mean so much. Please never hesitate to share about our organization to any family you might feel needs our support.

I thought stuff like this was able to be detected prior to birth via ultrasound and other tests. How do you miss the fact that a baby is missing part of their brain?

Gosh if only. Ultrasound can't see that in depth even a fetal MRI can't always see it. Additionally, we don't know WHEN her brain stopped developing. At 20 weeks it could've been normal and it was after we had an ultrasound that it stopped growing.

Aren't there also blood tests and other stuff pregnant women get to detect anomalies?

Yes if you know about it. This condition is not one of the "common" ones tested. It's RARE that's the difference. Now if you chose to do genetic carrier testing PRIOR to conceiving (which i highly recommend) it can pick up something like this.

So genuinely curious, why did you start your own charity instead of joining another one? There are so many charities out there already. Wouldn’t your efforts be better placed by joining existing charities?

No one does what we do. I looked and looked. Additionally, when you start adding more programs to an already existing organization, they start to turn out crappy. I've seen it first hand working with other organizations that have too much on their plate and can't adequately support all of their programs. We didn't want to do that. We wanted to be able to help in this niche area, very specifically.

It's kinda like when you go to a restaurant that has everything on the menu versus a place with a small menu. You might be able to get whatever you want with a big menu, but its only gonna taste okay. With the small menu, the restaurant can focus and do those dishes really well.

Exactly!

I wanted to let you know that what you’re doing is incredible.

Since Joey livestreams on twitch, have you considered setting up your nonprofit on Tiltify? It’s free and will allow your donors to get tax deductible receipts which collecting donations through your streamlabs page does not currently provide.

Doing Tiltify campaigns will also allow you to set up your incentives on the platform (like your hot chip challenge and nose wax - which btw… LOL)

We are on Tiltify! But I was unaware you could do those cool things!

What's your favorite memory of Lily that makes you smile?

She LOVED to roll her eyes and huff at people. It was amazing how much sass was in such a tiny body. I LOVED that about her.

Why am I just hearing about this disorder? How prevalent is it in non-caucasian races?

I impacts 1 in 75,000 so it's pretty rare. It seems to have the same occurrence rate in all races aside from very few are impacted slightly more.

Very brave letting the internet choose your first tattoo... you know about Boaty McBoatface right? 😁 Peace and love to your family this Christmas season, and keep fighting the good fight.

Hahaha I am absolutely terrified. We have to hit our goal first!

How absolutely devastating was it to think you were bringing a healthy baby into this world only to find out what she had? I don't think I'd ever recover. I've had my 2 babies in 2 years that both had to stay in the nicu for a week or so and I cannot imagine something more devastating than that. I guess I'm not really asking that first question in more asking... what helped you keep going after that, how come it wasn't detected during ultrasounds, this sounds like a nightmare

It sucks. I kept going for her, I knew she would never want me to just lay in bed and not move again. I kept going because I never wanted another family to feel as scared and alone as we did when coming home. It's not something that can be detected yet unfortunately.

How do you talk to your daughter both about being an IVF baby and about being a carrier? My 4 month old son is an IVF with PGT baby as we happened to discover we were both carriers for a fatal condition while going through regular fertility treatment. I want to be very open with him about this as he grows up but I'm not sure how to make it age appropriate for a young kid.

We are very open that she is our science baby and what was wrong with her sister. We currently tell her "you sister was very very sick and we didn't want you to be that way, so we asked some really fancy doctors to take mommies eggs and use daddy's swimmers to make special babies just for us" It's not 100% accurate but she's 2 lol

What do you guys think of people who choose to have disabled or medically ill children and/or subject siblings to "early parenthood syndrome" or "sibling-parenthood syndrome"?

How about people who have disabled or medically ill children and use them for clout / start social media accounts to purportedly "raise awareness" of life with a medically disabled child?

The first one is tough, I don't think people intentionally do it often, but it definitely happens and it absolutely sucks. Global Genes does a great series on siblings every year that talks about this exact situation.

I think it's really uncool that people use their child for fame. If it's truly awareness wonderful, but just using their kid sucks.

I'll check that out, thanks for the reference. I'm a pretty strong anti-natalist, and...

I'm personally astounded by the number of Tiktok/Youtube/Facebook/Instagram accounts that are "we knew we were going to have a child with a medical issue / mental handicap, but we chose to anyway", especially if it involves an older sibling. ALL the research says this is terrible for the older sibling and terrible for the family.

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

My brother lost his 26 year old daughter to a rare disease called MINGE. It was many painful years of trying to figure out what she had. I am her aunt and I was wondering how do you start up nonprofit? Also, how do I help him and his wife get through this? We also lost my other brother one month ago so have lost 2 family members in last 7 months.

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.

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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.

You said nothing is off the table, feel free to ignore as it may be a bit touchy. Why did you decide to have a kid even if the child now carries this genetic problem? Doesn’t this mean once she wants to have a kid, she will also pass on the disorder?

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.

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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.

Ah I see. So the chances of the issue arising are quite low. Thank you for responding. Good luck with your foundation, you are really helping a lot of people.

Thank you!

I'm a carrier of ZSD. What OP said as far as the odds go, they are pretty terrible and it only matters if the other person has it too. It's a rare, recessive gene. The grandma who I'm 99% sure gave it to me lived to be 101. I'm also very healthy, so her genes weirdly gave me that at the same time.

If you get the 250+ disease "carrier screening", you'd probably find that you are the carrier of something. Pretty much everyone has 1-2 things. Also, once you are known to be the carrier of something, doctors will low-key pester you to get your partner tested until he has the screening too, despite him being uncomfortable with the idea and not known to be of the ethnicity where the mutation is the most common.

Honestly, at the rate humanity is going, it's more likely my descendants will suffer a horrible fate due to global warming or the collapse of society than hey have a kid with this particular disease. And if they don't move to the middle-of-nowhere Québec, the odds will be pretty good they won't ever find a partner with it.

I like your comment.

Did previous ultrasounds not detect any issues with her brain? Asking as I had my 20 week anatamoy scan today and the false security it can give that everything is fine is a bit scary.

From one parent to another you have my love and I hope you’re healing in some ways.

No unfortunately they cannot detect something like that. I truly hope that your child is healthy and that you get many many years with them.

I'm a carrier for ZSD so I googled it a bunch when I first found out (and have since forgotten a bunch). Without looking it up again, someone with the syndrome's body can't do a vital process that is handled by the mother's body in utero. So everything is fine until the baby comes out and has to exist independently.

If you pay for carrier screening (the 250 gene kind) for at least one of you and your spouse, this would show up. It's about $400 out of pocket. The odds are that you each would be a carrier of something or several somethings, but not the same thing.

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.

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You are correct about the screening.

Can I ask why you didn’t withdraw artificial life sustaining support in the newborn period ? Honest question

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

Did it break up your marriage?

No it did not :) joey and I are still happily married. We just celebrated 13 years of being together.

What a wonderful thing you have done. I have two questions:

1.) What would you say are the top 3 most useful items you give in your boxes?

2.) Could you share your favorite memory of Lily? ❤️ (Directed at both of you)

ETA: a donation is on its way! Love supporting a cause that does so much good.

Thank you so much, friend!

Our most requested items are the label maker, whiteboards (which we now ship out directly from Amazon), and the gtube brushes.

I have to say my favorite memory is taking her to to the beach. She loved all of the sounds and the sun and the breeze. It was lovely.

How hard has it been to start up a none profit charity?

Please see above for the answers to this question:)

I'm also a carrier for Zellweger Spectrum Disorders. I'm curious, which mutation do you have? (I have Pex 6, which I'm 99% sure came from my French-Canadian grandmother).

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.

Hi! Hope you're both doing well, now my question,

What's your next step? Are you going to expand the actions of the organization?

Sorry for any typo, my english is horrible

Hi Thank you for the question. Our main goal is to broaden our reach!

Do you think the government should step in and restrict People that carry certain genetic disorders from having children?

no. I think that is the government stepping too far into our lives.

How do you feel about people who have a genetic disease with a similar chance of passing it on, but cannot afford IVF or genetic testing, and go ahead and just get pregnant anyway?

So "technically" there is only a 25% chance each pregnancy to pass on a genetic condition like ours. Many people choose to go this route. It's not for everyone. Sometimes accidents happen to. I personally couldn't make this choice.

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why

On the Zellweger spectrum are you more of a Bridget Jones person or a Me, Myself and Irene person?

???

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Do you feel your experience serves as a case against abortion?

To me I feel like it's a case FOR. People shouldn't have to do this

So even if your child is healthy there's a chance they will pass this genetic disorder on to their kids. What made you decide to reproduce anyway, in a world where most of our existential problems are from population pressures?

No not quite, we all carry roughly 10 genetic conditions, however you have to meet the right person that carries the SAME condition as you. This is why Joey and I highly encourage carrier testing :)