Our Daughter Died From Zellweger Disorder and We Started a Nonprofit In Her Honor! Ask Us Anything

What do you include in the boxes that you send and why did you choose those items?

These are the items we let parents pick from for their boxes. They can choose every item or just one. It's up to them. Our goal is to relieve the burden so we don't want to make them have extra junk in their house that they need.

Every single one of these items was recommended to ME by our homehealth nurses when lily was still here earthside. We then discussed with many other home health nurses, as well as NICU and PICU nurses to make sure we had every possible item we could think of that aids in the organization.

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LABEL MAKER: to labeling organizers, whiteboard, and supplies. Having clear labels that are easy to read are incredibly important in emergency situations.

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CLOCK: to help nurses and parents accurately chart without searching on a watch or phone. This was crucial for us with Lily's seizures. That way our nurses could time without any issues or delays.

WHITEBOARD: to keep track of important information for nurses, doctors, and parents. Things like medications, feeds, last stool, last g-tube change, last trach change, their emergency info.

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

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SET OF STRAW BRUSHES: cleans out gtube, trach, and oxygen tubing, as well as syringes. Parents only get so many supplies a month so this helps preserve the items.

BOTTLE WARMER: warms up food for the child, most NICU and PICU are equipped with one. Certain formulas won't go through tubes when they are cold and other children can have aversions to cold liquids going int otheir stomach.

SHOE ORGANIZER: hanging door organizer to organize all the supplies the child will have; gauzes, tubing, syringes, etc. This is a designated space for the child's supplies.

SET OF CORD WRAPS: to organize the different cords that the child will have. This helps keep them from getting tangled. Especially if you have really long oxygen tubing.

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

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GRASS DRYING RACK: a designated space for the family to dry child's supplies. We want to make sure that the child's items are in a place that is sanitary just for them. this is incredibly important for the child's health.

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.

This is so truly laudable and such a worthwhile and clever list of supplies. To provide organizational goods like this to just help a little with the incredible amount of equipment, hygiene and general medical procedures is I think a real blind spot for insurers and the medical system. I'm sorry for what your family have been through and very proud people like you exist to try and turn the loss of your daughter into something that can help others. Thank You for very much, I will share this appeal far and wide for you all.

Thank you so much!!

I tried to donate but it wouldn't take my card. Any suggestions?

Oh interesting, that is very strange, you can also donate via facebook or VENMO or PayPayl

On Vemno we are lilyslist2018 and our paypal link is paypal.me/lilyslist

As a parent of a special needs child I have to say what you are doing is so amazing. What a thoughtful list you have put together! A lot of people dont even realize how much the costs for these additional things really add up. In case you are looking for ideas, I have a few more suggestions for your list. Plastic storage bins of various sizes, cloth zipper bags of various sizes, backpacks/bags to carry supplies on the go, and squeasy sport brand silicone bottles (a must have for gtube kids).

Oh I really like your suggestions. Can I ask about the last 2? The Plastic storage bins are phenomenal but a shipping nightmare for us, BUT the other 2 would be easy for us to include in the boxes. What do you use the zipper bags for? What do you use the squeasy sport bottles for? We have some backpacks that get donated to us every so often that we send out when we get them!

Zipper bags are for carrying and organizing small suplies on the go. We use them for things like medicines, backup gtube kit, hand sanitizer, syringes, and all those miscellaneous little things we have to take with us when we go anywhere. The Squeezy Sport bottles connect to our 60ml cath tip syringe and so I can draw the formula up into the syringe for bolus feeds instead of having to pour it in the syringe which risks spilling. Some people connect the bottles directly to the extension but that hasn't worked for us.

thank you!!!

The squeeze bottle is brilliant and I REALLY wish Ithought would've though about that with Lily. Thank you! I will be bringing this up to the board!

I use a plastic storage tub to store all of my daughters medicines (that don’t need to be in the fridge). They’re amazing! I’m not sure if it matters or would help any, but if you have a Target credit card they offer free shipping and a lot of amazon does as well. Would it be possible to order those separately and have them delivered to the person as needed instead of you trying to ship them yourself?

So one of the reasons we ship all of our items in one box is to reduce waste for the family to have to deal with. medline and other medical supply companies have a habit of sending one giant box with a bunch of bubble crap and a little tiny item. Many of our families live in small homes and apartments and that stuff adds up quick. Plus we like the families to have the ability to get everything set up together with their love box pamphlet that we send (guides them on how to set up and use their items)

In the beginning we sent everything separately. And currently we are sending whiteboards separately because it does help reduce costs.

That totally makes sense! I hadn’t thought of that. I know there are times I get my daughters medicine and the packaging is just crazy to me! We have so many ice packs, insulated bags and bubble wrap too! I never know what to do with it all

It's INSANE how much crap they send you. I'll never forget the time they sent us Gtube gauzes in a box that is like 2inx6in..... In like a 12foot by 3 ft box! Like what in the WORLD!! and it was filled to the brim with plastic crap.

You folks are amazing. If this happened to my daughter, who will be born in April, I think I would just lay down on the ground and never stop crying until I starved to death.

Thank you! <3 There are definitely times where I wanted to do this.

This is amazing. My first was medically fragile for a long time post necrotizing entercolitis) and everything you just listed was amazing for us. I still habitually use a lot of it even though I don’t have to clean tubes or chart anything anymore. Reading this list brought back so many memories of labels and shoe organizers full of ostomy bag supplies.

I too still use a lot of our items as well. We even used a whiteboard for our TDK because I felt lost without one. I use the straw cleaners for everything and the shoe organizer to organize some of Lucy's junk!

...lily was still here earthside.

Love this term.

thank you!

Hey there Taylor and Joey! How do you plan to involve your 2nd daughter in Lily's List when she's older?

Wishing you a prosperous giving tuesday :)

Hey there Sunshine!

Oh wow that is a really good question. Joey and I have talked about this constantly, we never want to make her feel pressured into being involved but we would love to make sure she knows what we do and why we do it. We worry about making her feel forced to fall into certain shoes. So the decision will always be hers if she wants to be involved or not. The same goes for the other organizations that we participate in. We want to make sure she gets to live her own life and never feel like she was lily's replacement or that we expect her to be extremely involved in the rare disease community, the nonprofit community, or the deafblind community.

How/when do you plan on telling her that she's is a carrier of this illness? I imagine that it won't impact her until she is ready to start get family, but I'd probably want to know beforehand.

Probably pretty early on. We are heavily involved with the GFPD, which means she'll most likely be learning about Zelwegger spectrum from a young age. she will 100% know before she is a teenager.

I'm touched by how much you've thought about your daughter's separate identity.

thank you!

We made the difficult decision to end our first pregnancy due to a Trisomy 18 diagnosis (we have since had a wonderful baby girl who will soon be two). That was tough enough, I can't imagine not knowing of a disorder this serious until after birth. Is this condition not detectable during pregnancy?

Oh goodness, that is such a difficult decision to make and I am so incredibly sorry. So much love to you both and congratulations on your healthy baby girl.

It is detectable by Amnio or CVS IF you know that you are both carriers of the condition. However, if you don't, it really isn't clearly detected by common genetic testing in the first trimester or the anatomy scan. Many of the children in the GFPD had some red flags during their ultrasound (club feet, large head, things like that) but nothing that automatically points directly to PBD ZSD. And even then, some children aren't as severe as lily, so they don't get diagnosed as early and don't start developing obvious symptoms until a few months. Even MRI's aren't truly capable of detecting everything inside the womb. Lily was missing 1/4 of her brain and that wasn't picked up until she was born. It is really unfortunate. I'm hoping that technology will change eventually make this more detectable.

If you could have known early on would you have considered an abortion? Sorry if this is too sensitive to ask.

This is what I answered in a previous question Do I feel like it is more humane, yes. In a removed scientific sense, I do. I say it that way because if I was put in the position BEFORE I knew what it was like to have a child with this condition, I have no idea the decision I would make. I answered below stating that I don't know if I would abort or not if faced with the decision. But ethically and morally I guess I just contradicted myself because I would choose any way to abort.

Thanks for helping me clarify that in my head lol

anyway, watching my kid suffer and just slowly deteriorate is something I never want to watch happen again. Simply watching my 2nd daughter suffer from acid reflex is torture.

But Yes, I think it would be more humane.

Thank you for answering.

Of course!

Do you know if more in depth genetic tests like the NIPT (Non-Invasive Prenatal Testing) and parental carrier test could detect something like this? I'm currently 8 months pregnant and we had both tests and two 4D and 3D anatomy scans showing nothing but a healthy baby. Things like this that may not be detectable are terrifying. I'm so sorry for your loss and I think it's wonderful what you have chosen to do in her memory.

It is not detectable if you don't know youre a carrier. It is not something they commonly test for BECAUSE it is so rare.

It's so fucking terrifying and it SUCKS. I was in fear my entire pregnancy with lucy because things can still happen and there was a 1% chance she would still have Zellweger.

Thank you so much!

That's so scary they don't test for it! I can only imagine the worry with Lucy but I'm so glad everything was fine. Thank you for responding to my question!

Yes it is! But it's so rare that the expense unfortunately isn't worth it

Just a quick correction, MRIs can absolutely detect everything inside the womb. Here's an old paper from '06 about it: http://www.ajnr.org/content/27/2/333

MRs are just not part of the prenatal screening. And as you yourself mentioned, though prenatal biochemical diagnosis of the disorder is possible in amniotic fluid, it's also not a part of the typical prenatal panel.

Actually, they cannot detect EVERYTHING. So we have a member of our organization that DID have a prenatal MRI done and it did not see the excessive about of fluid build of that their child had due to the condition.

What would you most like to tell us that no one ever asks about?

What it's like to live with the thoughts in your head of watching your child die. No one asks how bad my PTSD is. No one asks if I remember that day. no one asks if I'm ok with how it went down. No one asks if I'm even doing OK. they ask about lily and her life and how I coped with that. they ask about my living child. but no one talks about her death unless it's a loss parent in our rare disease group.

Does this imply that you would like to talk about this more with the people in your life? Like if someone did ask about this would it be a welcome opportunity to talk more about this important event or would it feel like they are prying - does it depend on the moment?

Yes, but I'm incredibly afraid of making people severely uncomfortable. People shy away from death completely and even more so with children. So it feels like my child almost didn't actually die.

Sometimes it would depend on the moment, but to be honest, no one ever really asks about it (except for one good friend of mine did recently and I really appreciate that she did) so I'd probably word vomit on that person.

Can you please tell us about it? Anything you feel will be extremely appreciated by anyone and everyone who will suffer a death... which is all of us. Pardon me if this is intrusive. I feel like it’s important to hear the end of Lily’s story too.

I think something that I want to share that most are unaware of is, that she knew. She knew and she looked at me for permission.

At first, we didn't understand that what was happening was the end. That she was dying. We originally thought she was just struggling with her breathing. But then I suctioned blood from her throat and I instantly though "oh shit, this is it" I looked lily in the eyes and even though she was blind I could see her looking directly INTO me. As if she was asking me if it was her time if she could go. I looked down and saw that her raised birthmark was no longer bright red, but black. At that moment every suspicion was confirmed, this was the end and she was dying.

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Joey and I had expressed intense want to have our last moments with her be as peaceful as possible. And I am forever grateful we got those moments. We stopped everything invasive that we were doing. We turned her oxygen up as high as possible to make sure she was comfortable and laid her down on her favorite side so she could just go to sleep comfortably.

Joey and I laid down with her and turned on her jazz music that she loved so intensely and I told her " It's ok baby, you can go be with Jesus, it's ok" and then I prayed. I cried and prayed. I asked God to take her quickly and peacefully. I asked for her to finally be a rest and whole. And he did.

Joey, Piper (our dog) and I laid with her for the 30 minutes as her body systematically shut down and I listened as her heartbeat slower and slower until it finally stopped. And then I just held her. I held her chest to chest. I never got to do that with her before because it was too uncomfortable for her. I held her for an hour until our family started arriving.

That hour of holding her is forever ingrained in my brain.

The phone call I made to my dad to ask him if he was on his way and then having to tell him she was gone and then hearing his sob in the background, is forever seared in my brain. To this day it's one of the most distinct flashbacks I have of that moment.

The look in lily's eyes that she gave me before we all realized what was going on, is forever seared in my brain.

but I wouldn't trade or get rid of any of those moments because their moments of and with lily and I never want to forget anything we have with her.

I am so sorry for never asking. Thank you for sharing this. Love you 5 so much 💕

I think I've shared before with our group but thank you love ❤ so much

This is so moving. I've often thought about how you must feel about Lily and if you're having a bad day, especially since I imagine it must be a stark difference to your living child. I'll try to reach out to you more often when I think of you instead of holding it inside, now that I know it's something that is needed. ❤️

oh colorful I hope you know how much that would mean to me. I've always cherished our friendship. Please don't ever feel like you have to hold back. I often don't share because I just don't want to ruin everyone's day, but there are days where it is just hard <3.

my life would not keep going without my fabgrads. ya'll are an essential part to my ability to function in my life with and without lily

I am so incredibly sorry. I know it means nothing to you, but this mother of three boys is crying in her pillow here in Germany right now, for you and your husband and for Lily and because no parent should ever ever have to go through that.

Thank you so so much ❤❤

Thank you for letting us hear these incredibly beautiful and important moments. I’m so sorry for your loss and I thank you again for your bravery in sharing with strangers. Peace be with you and your family.

Thank you so much!

This is the most emotional and real account of a terrible trauma that I have ever read. I am feeling such pain for you and your family. I am so happy that you recognize the healing power of discussing and sharing. I cannot even begin to imagine how this experience has and will affect you and your family. Thank you so much for telling us part of your story and for all that you are doing for others. I am incredibly impressed by the graceful and intelligent ways you are going forward. You and your family are amazing people. I am so sorry that you (or anyone) had to experience such devastating pain.

Thank you so much for your incredibly kind words :)

This was agonizing to read. I am so sorry for what you and your family went through. No one should have to go through this.

Thank you for still reading.

It's interesting that on both sides the fear is of making the other person uncomfortable!

What you said about feeling like she didn't actually die reminds me of something I read a while back describing praising something as the "consummation of joy," like you're almost fulfilling the beauty of a sunset by being able to turn to someone next to you and have them see it too, it seems like that's also the case with death and trauma maybe, like being able to share it with people fulfills and validates it..

I see you've responded to someone else further down so thank you for sharing your insights and story here!

thank you so much :) I really appreciate what you have to say.

How are you doing? It sounds like you’ve found a great way to channel your energies but that can’t erase all those emotions. I have a special needs child and while mine is still very much alive she is not currently able to live at home and one of the hardest things is that people forget just how much your child’s needs affect your own health and well-being.

I'm doing ok, lily's list fills a lot of the gap that I would probably feel or worry about. but yes, for a long time after lily died my husband and I felt pretty alone, to be honest. People just stopped coming around. My close friends stuck by and so did my parents but everyone else that had suddenly cared just drifted away. My physical health took a deep dive after lily died and then I got pregnant, I am FINALLY at 4 mos postpartum, starting to feel physically more like myself than I have since before I got pregnant with Lily.

Sadly, losing a child no matter the age is a completely unnatural experience and completely out of the normal order of life, yet it is all to common. Parents who lose a child are in a very exclusive club that NOBODY wants to join and the price for membership incalculable. I think we need a nationwide parental grief support network. Friends, families and coworkers don't know what to say or do after the loss of a child, and parents are left to try and navigate the dark path of loss without a clue what to expect and what is normal.

On December 13 it will be six years ago that our daughter died at the age of 19 instantly in a car accident. As a parent who has lost a child, my heart goes out to you. Your daughter likely had hospice and I know they have great resources (I used to be a Hospice RN). For us, the community resources for grief, in a large Midwestern city were sorely lacking. My question is regarding grief. Did you find there were adequate grief resources for you?

We are in a good place now but we will always carry our burden of losing a child. If I knew how, I would work towards building this vital support to grieving parents.

I'm sorry about your daughter. We were fortunate to find others in a similar situation with the Global Foundation for Peroxisomal Disorders. Having a group of parents that can relate to our situation was incredibly helpful.

There's an entire portion of life that we like to call the "morbid logistics". These are items and tasks that must be completed that one never considers before facing with them. In our instance we never considered arranging a funeral, donating a baby's organs, or having to communicate a diagnosis to family and loved ones. All of these terrible tasks were made much easier by the families that had already gone through such a horrific experience.

I agree that a nationwide network would be beneficial. Would you consider starting one?

It sounds like you had a great support network and that warms my heart! Yes, I would consider starting something but need to network with others as there is MUCH I don't know.

Even creating a day of remembrance or an event like a walk in the community for bereaved parents to meet others would be a good thing.

Goodness, I would love a nationwide support system but I'm not sure if something like that even exists. There are support groups virtually for families who have children die that were deafblind or had rare diseases but nothing just specifically medical. There is nothing specifically for medically complex bereaved parents and I think that would be amazing. There is a remembrance day for bereaved parents and infant/pregnancy loss but sadly there is a huge lack of resources for parents medically complex children,

Have you considered adoption or is 25% low enough to consider rolling the dice again?

We did consider adoption, however we are military which makes things EVEN MORE challenging to adopt. I also personally felt very strongly about having my own biological child.

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25% was WAY too scary for us to roll the dice which is why we chose to pursue IVF. Through IVF we were able to rule out the Embryos affected by the Zellweger spectrum as well as chromosome abnormalities. ,

Renee Zellweger?

nope not the same. we wondered the same thing!

For people who would like to donate items directly, what is the best way to do that? And what items are most needed for your Love Boxes?

YES! You can do so through amazon! https://www.amazon.com/hz/wishlist/ls/3VYZVLW5HFRR8?ref_=wl_share

Our most requested items are: label makers, Love Boxes: Surge Protectors and FIle organizer. Those are some of our most expensive items as well.

We greatly appreciate donations of direct items. It makes a HUGE difference.

What’s your most favorite memory of Lily?

I want to hear Joey's answer on this too. But my favorite memory of Lily was when we took her too the beach for the first time. She was so happy. It was windy and she loved the wind. There were lots of LOUD noises that she could actually hear and it was the perfect amount of sun out for here where it didn't bother her eyes and she was warm. Seeing her so happy and calm while we were there, was incredible. It was also pretty ironic as Joey and I are not big fans of the beach lol

I love that your answers were different memories, but of the same thing: watching Lily experiencing for the first time. I’m so glad you guys were able to experience that with her!

Thank you!

Why start a new non-profit instead of working with an existing non-profit (create a special branch) to avoid the fundraising/501c status/administrative costs that are related to running a non-profit?

The reason why we started our own nonprofit is because there isn't really any one organization that works with such a broad field of families. Most organizations in the medical community focus on JUST rare diseases or JUST premature babies or JUST families in the PICU or NICU. We work with ALL of them. Not only that, we are incredibly unique. These items are not covered by insurance nor qualify for federal aid because ufortunately they aren't deemed as "medically needed" but they ARE needed for the sanity, safety, and quality of life for our families.

We did reach out to a few organizations that are a little broader, but not a single one was interested in partnering with us, so we moved forward on our own and haven't looked back since.

The 501C aspect and administrative aspects are actually not that expensive. Right now it's just me doing most of the physical work as well as our board members and we do it all as volunteers. So none of us make any money. Our administrative costs are fairly low because we only run the love box program. The 501c3 aspect was only around $300 for everything when said and done. Because we applied when we were small, it was more affordable! We were able to file to 1090 EZ form and then follow up with an automatic qualification in the state of California!

Do you hope to have any more children? Also, is there a risk of your daughter having children with this? Not sure if there's a genetic test her future husband could take for this

To piggy back off of Joey's answer, we are actually done having any more children as of now. After my pregnancy with Lucy, I was done haha so we do have 3 healthy blasts still sitting on ice. piggyback

What do you feel like the biggest challenge is for Lily’s List, currently?

What advice do you have for others who have experienced infant loss?

I would say our biggest challenge is a lack of funds. We have a VERY LARGE amount of families who need us and not enough money. We received over 90 requests this summer and we absolutely do not have the funds for that. Which is why giving Tuesday is so important.

I would say another challenge is just trying to make our boxes even more affordable. Certain items are just so crucial but also really expensive, which makes things challenging.

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The advice that I would have is to never apologise for how you feel, whether that is happy or sad or mad or scared. And Never be afraid to share their name. I talk about Lily constantly because I want to make sure her name NEVER EVER dies.

What's your favorite sandwich?

HAHA I love this question because I LOVE sandwiches!!

I really enjoy a classic turkey sandwich with lettuce tomato cucumbers and LOTS of mayo on french or sourdough bread.

How would families generally find out about your nonprofit? Do you partner with hospitals in your state, around the nation? Word of mouth?

I agree that what you’re working on is truly unique and something that I haven’t heard of another organization working on. I feel like there should be plenty of partnership opportunities and I’m surprised that there wasn’t a lot of uptake on this. Do you have any suspicion as to why?

How are you financially supporting the family now if you’re not making $$ from this? Do you both work full time and run this as well?

Thanks for sharing with us so much about this disorder and what it takes to run a small nonprofit! You’re both are such an inspiration!

I'll number the questions you asked so I can make sure you get concise answers :)

1. Most families find out about us through social media. Primarily Instagram! We have some families on Instagram who have a very large following in the medically fragile community which is how we get out. We are also partnered with certain organizations that automatically share our info with their families and we share their info with ours if they meet that organizations criteria (i.e. they have the organizations disorder) we have a few hospitals who are aware of us, but right now we are just doing word of mouth because we simply do not have the funding to be made THAT public. We have also been shared on a few key facebook pages for families with medically fragile children.
2. ACK I agree and I honestly have no idea. We have had ZERO luck in getting any sort of monetary partnership, whether that's through literal dollars or physical items. I have plenty of people to volunteer to help pack boxes and help us be successful in other ways, but not in funding forms. I'm not sure if I just am not reaching the right people within companies but I have been turned away from almost every company I've reached out to for even a discount on their items. And to be honest this is shocking to me because we spend a lot of money on very specific items. I WOULD, however, like to make a shout out to Blue Summit Supplies as they do discount their whiteboards for us! Which is amazing and they are an incredible company. We received a tax credit relief from NewEgg but we, unfortunately, don't order a lot of items from them.
3. Well, my husband is active duty military. So joey works full time to I can stay home and take care of Lucy and run Lily's List as efficiently as possible to ensure our funds are going to the families. In the beginning I was working part-time and running lily's list but that became very challenging. So when we moved this summer we agreed that I wouldn't work at all.

Thank you SO MUCH!

Are you or anyone you know skilled at making videos?

There's a charity fundraiser every year called the Project for Awesome where people share videos about charities and then they are voted on to pick charities where the money raised goes to. I know a lot of the reddit parent groups know you guys and would probably share and vote for you. Last year the charities that won that portion of the event got about $18.5k.

You'd only have a couple days to do it now and obviously no sure thing you'd get the money, but maybe worth a shot! I'd vote for you.

http://www.projectforawesome.com/

Holy crap thank you!!! My husband is actually a pretty skilled videographer and we have a decent amount of video footage from our families.

Thank you thank you thank you!!!!

Piggybacking in your response. I’m a student working to become a child life specialist. I have done a lot of researching of programs to assist future families I’ll be working with and hadn’t come across Lily’s List, but am happy to learn about it now. Do you work with child life specialists at all? They would be great partners in hospitals to help raise awareness for Lily’s List.

To be honest, I didn't even know this existed! We would LOVE to work with Child Life Specialists. I would be enthused to talk to you about that!

Just chiming in that I agree getting in touch with Child Life Specialists to let them know about your services would be an awesome idea. My good friends cousin is currently in school to be one and has expressed that they create lists of diseases with the matching resources listed next to each one so families have an easy way of seeing what’s available to them outside of what just the hospital offers.

Here is the link to a large health system near me with contact info at the bottom for their Child Life Specialists - it gives a good summary of what they offer and what exactly they do. Hope this helps a bit and I hope you take the time to reach out to Child Life Specialists!

Info

holy cow! Thank you so much! I really appreciate it!

Why was having a biological child so important, knowing that at the very best case it would still be a carrier for this terrible disease?

You had the money for IVF--Why didn't you choose adoption, instead?

I am not sure why I felt so inclined to have a biological child, it just was something I felt needed. ACTUALLY we could have had a child who didn't carry the disorder at all. We actually CHOSE to have a daughter who was a carrier because we PERSONALLY wanted another daughter. She will know when she's older that she is a carrier, should she chose to have children of her own.

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So interestingly enough, IVF was cheaper and adoption isn't actually easy. For US IVF was more affordable, gave us the ability to have a biological child, and was easier for us. Adoption isn't simple or easy. Most people don't realize that. It's not as easy as going "ok let's adopt a child" it takes YEARS. there are home studies and psychological studies done on ther parents. Because we are military, we move A LOT. Which makes it hard to get anything completed. Before we have to move again.

To add to that, adopting a BABY is even more expensive, more rare, and more challenging. It would cost upwards of $50,000 to adopt a baby. And we wanted to have a BABY. This is a personal decision for every person. IVF was $16,000 for us.

I am going to say this and I hope this doesn't sound rude: if you come in contact with someone who is in a similar situation to us or struggling with infertility, saying "why don't you adopt instead" can be incredibly offensive and callous. I personally don't mind the question, ESPECIALLY in this setting, BUT others mind be incredibly offended and hurt by that question. Our goal with this AMA is to be as informative and open as possible, so I wanted to let you know.

I am going to say this and I hope this doesn't sound rude:

Not at all, that is precisely why I felt it okay to ask it here, given that you specified that any sort of question was acceptable. I appreciate the response, thank you!

Thank you for understanding!

Would you have aborted the baby during pregnancy had you known she had the condition? I understand your answer may differ depending on the stage of the pregnancy that you find out about the disorder in this hypothetical scenario.

You know I don't know. I really struggle with this question. I think I wouldn't know until I was faced with that decision.

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That is one of the big reasons we chose to pursue IVF. I wasn't sure if I could make the decision and I didn't want to have to make the decision. I know that isn't an amazing answer. But I was so scared of being put in that situation. That is also why my husband and I use multiple forms of protection. pursue

Did your pregnancies differ between Lily and your new baby?

OH YES haha so different! Lily's pregnancy was fairly easy in terms of pregnancy. I still didn't enjoy it but wasn't awful. Lily moved but I didn't realize how low tone she was until I was pregnant again. Lucy was so much more violent than Lily was. I remember asking the geneticist how I didn't know something was wrong with Lily and she mentioned that it was because I didn't know any different and I might notice a difference if I had another pregnancy. I remember being so angry because it almost felt like it was my fault I didn't notice (she never intended it that way, just how I felt). However, she was so right. Lucy was SO MUCH more active and strong in the womb than Lily was. I never understood moms who got annoyed with their child's movements or felt like they hurt, until I was pregnant with Lucy. It really opened my eyes. My pregnancy with Luy was also REALLY tough. I had to do lots of injections for hormones and then I was even sicker and then I ended up hospitalized with pneumonia. The whole process was so different. Even their labor and deliveries were different.

You always hear moms and doctors say "every pregnancy is different" and they are absolutely right!

First, awesome job with this and sincerely sorry for everything you have gone through.

One part I’d like to hear more on is what you all are doing or planning on doing for the mental health and guidance for parents that get thrown into this situation? As someone went through a portion of this (not the same sickness or horrific outcome you had) with a child, we felt completely unprepared. We learned a lot while living at the hospital for months and would do many things different in the future.

To me, a guide on what to do as a parent new to hospital life under such sever circumstances would have been helpful

Great to see you turning something so sad and negative into such a positive. Kudos to you both

Thank you very much!

So something that we do have is organizational resources for families in the hospital. It's a 4-page document with about 30 different organizations to help parents in different situations in and out of the hospital. We have some of our Love Box parents putting together a Trach Parent tool kit for families.

Unfortunately, there are very limiting mental health resources for families in situations like ours and depending on your insurance, you can get a lot of help or no help. We tote our self as an organization that provided resources and more than just a box. So if a family reaches out for me with questions or asking for help, I start reaching out to my channels to see how we can get that family the support we need. I do what I can to make sure families are floating out in the wind completely lost.

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Some organizations have these resources for Preemie parents: Every Tiny Thing, Carters Cause, and Grahams Foundation. They are all great resources for NICU parents, but they cater to Preemie parents.

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Thank you again!

Do you ever alter the contents of your boxes if the house you're sending the box to doesn't need the usual list of items?

So very rarely do we change the contents. Each family gets to pick and chose what items they want. Every once in a while, we have unique items donated to us (formula mixing pitchers, drying trees, trach clips) and we will ask a family if they want those items in addition to the items they picked.

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We do however reach out to are love box families for new item ideas, suggestions, things they don't like about some of their items. That way we can stay on top of everything and we don't keep sending items to families that they don't want or need.

First let me offer my most sincere sympathy. also congrats on having the strenth to do this. I lost my daughter last September to a horrible accident. My question is, at what point or what was the catalyst that made you take action and like this?

Thank you! I am so incredibly sorry to hear that it sucks having your child gone.

I would say that thing that finally sprung me into action was two things. One was the fact that I felt so incredibly useless and purposeless. I had nothing to do anymore. I was a nurse to lily 12 hours a day and then we had an ACTUAL nurse in our home for 12 hours a night. I went from extreme need and regimented schedules to NOTHING. I had nothing anymore. And I needed something that gave me purpose.

The other thing was my dad and husband pushing me to do it. They kept bugging me to start and finally I got so annoyed and wanted them to shut up lol So I did and it's been the greatest reason to make someone shut up haha

I'm sorry for your loss. It's incredible that you were able to make the most out of what is possibly the worst possible thing a human being could experience.

My question is: What made you decide to do this? How long after she passed did you decide?

Thank you!

Originally I thought the idea came AFTER lily died, but I was looking through my journal that I wrote to her and I had actually come up with the idea in April of 2018 and she died in July of 2018.

What made me decide to do this is I saw a need and a lack of support for that need. I figured there HAD to be other parents out there like me who felt the extreme need to have everything organized in their home. So I started asking my friends with medically complex kids if this was something they felt would be useful. Then I asked nurses in the NICU and PICU if they felt like it would be beneficial and it went from there.

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I didn't make any movement on lily's list until September of 2018. I needed some time to kind of just exsit for a little bit after Lily died and then I felt purposeless, so I embarked on Lily's List.

I just really want to ask, how are you both? How are you doing? Because I can't imagine something like this happening and just I can't. I hope you're both okay or as close to okay as you can be.

I'm doing ok. Lucy and Lily's List gives me the drives that I need to keep pushing. Some days are WAY harder than others and some days are way better than others. The days were lucy is constantly smiling are amazing. The days like today where people rally around our non-profit are good. The days where lily fills my backyard with hundreds of black crows are awesome.

The days where my heart aches with longing for lily suck so much. But I will NEVER EVER regret or want to forget anything we ever had with lily. It was and is some of the best moments of my life. As Joey said, she only got Joy from us. She never had to see the monstrosity that can be our world and as a believer, she got to go to heaven, which is incredible in my mind.

With your new kid, at what point in life will you bring up the subject of their dead sister / that they are carrying the gene. I assume you have to have this discussion since you said they also are a carrier and if i understood you right have a 25% chance of their own kid having this issue.

Will you talk about it early life and explain why mom works for the association at the same time? Or during teenage years when kids can become sexually active? Or really only at adulthood when they plan and a kid to warn them about their risks and options? (or anything else, just gave sample answers to clarify my question).

This sounds like a tough and emotional subject that will need to be talked about years down the road and i was curious if you had plans for it?

Considering we have a crap ton of pictures up in our house of Lily, Lucy will be made very aware of Lily from early on. Lucy already really loves looking at pictures of her sister, so she'll probably ask. Our philosophy is honesty in a language that is understandable for their age.

We absolutely have to have this discussion. She only has a 25% chance of her child having this disorder if she actually HAS children with ANOTHER person who is ALSO a carrier of this disorder. So if her partner (or sperm donor or whatever) doesn't carry this genetic mutation, then they are totally fine.

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We probably will discuss early on why I do what we do. We spend so much time working with these multitudesdisease of rare desiease and medically complex organizations that she bound to have questions. We will most likely have multiple conversations about this at different stages because she's going to comprehend them at different levels at different ages.

we definitely have some very surface level plans for discussion and I know we will make more concrete ones as she gets older.

Has anyone tried to politicize your daughter one way or the other? How do you handle that?

What traditions have you started in order to have some happiness when remembering Lily beyond what might be tinged by grief?

not yet that I can think of, but I'm sure that could happen. People do insane things in situations like this.

So every year for Pause for PBD we plant a plant in Lily's honor. We called her our Lily Pants so we celebrate her life by doing Lily Plants to recognize her and all of her friends affected by this condition. This was our second year doing it.

Lily's List brings me an incredible amount of joy and happiness and makes me remember the good times with fond memories and I get to laugh with other medical needs parents when they experience medical need parenting goofs like feeding the bed (where the gtube leaks and the crib gets all of the formula).

Every year for her birthday we celebrate by doing something related to animals outside (lily loved animal noises and the wind) and then we have Share the Light for Lily's birthday in February. Share the light is our annual fundraiser for Lily's List that we sell t-shirts for the say Share the Light because with Lily's List we are sharing Lily's light as she was a bright light in our world.

Is your other child (Lucy?) old enough to know about Lily yet? How did you/will you talk about it with her? Obviously with these things you do she's still a big part of the family and your lives (I mean she still would be if you weren't doing these things, but you know what I mean I hope).

She is not! Currently, she is just shy of 4 months old but she is aware of Lily's pictures. We have tons of pictures of lily around our house and she loves looking at them :) eventually, we will share lily with her and help her understand where her sister is in terms that are on her developmental level.

I do know what you mean and I really appreciate it!

What made you decide to keep this child and care for it? Are there even options if you didn't want to deal with this(Adoption, foster care, etc etc)? I feel horrible asking this like that, but have you ever thought of ending the child's life?
I feel like this is a part of assisted death that should be thought about same as we do with the suffering elderly.

Well, it wasn't until she was born that we knew and when we learned of her condision we wanted to make sure she would have the best quality of life possible.

I personally never thought about ending Lily's life. for me, it was all about caring for her until the end. Some of the kids on the spectrum live incredibly long fulfilling lives, at the time we had truly no accurate idea of how long lily would live. We have many friends in our disorder group that were told theirthere child wouldn't live past 2 and they are now in their twenties and have made incredible strides for research and communication for those with deafblindness.

Scheißkopf? Where does this name come from?

It's moments like this that make me love reddit a tiny bit. "Hey I'm shithead and I'm here to talk about a very serious issue and charity I run"

haha right?!

I learned the word for shit head in german class in high school and thought it was funny.

How many people are carriers? Is there a certain race/nationality that’s affected disproportionately?

I actually truly don't actually know that answer.

yes, french Quebec Canadians are larger carriers of peroxisomal disorders.

Hi there, sorry that I was late here. But I would like to ask, are there any papers or research articles on this? I would like to read them for my knowledge. And also, how do you cope with the lost of your sweet Lilly?

Yes there are!!! Thanks for asking!

https://www.thegfpd.org/scholarly-articles

There are LOTS to read there!! You can also read about the current research!

I think I just keep going and hoping that others remember her. I watch her videos, I look at pictures, I talk about her to Lucy

You know, this trailer changed my mind; I originally thought, "A Black Widow movie, who cares?" then I watched it and thought "Okay, that was pretty badass."

now I need to have a trailer like that change my mind about Falcon and The Winter Soldier because Those are two characters I don't really care about, but their comedic chemistry does have me, even since I saw it in civil war.

I'm really not sure I understand your question.

I'm going to ask possibly an insensitive question, I'm sorry in advance, feel free to ignore it...

If you had learned of the disorder, prior to birth, do you feel it would've been more humane to terminate the pregnancy? I've got 3 children, I couldn't imagine having to make that decision, but I think it's a very important option to have in situations where the child may suffer.

We answer all questions :)

Do I feel like it is more humane, yes. In a removed scientific sense, I do. I say it that way because if I was put in the position BEFORE I knew what it was like to have a child with this condition, I have no idea the decision I would make. I answered below stating that I don't know if I would abort or not if faced with the decision. But ethically and morally I guess I just contradicted myself because I would choose any way to abort.

Thanks for helping me clarify that in my head lol

anyway, watching my kid suffer and just slowly deteriorate is something I never want to watch happen again. Simply watching my 2nd daughter suffer from acid reflux is torture.

But Yes, I think it would be more humane.

Why not adopt? If you know you have to spend so much money to have a child.

This is the answer I gave to this same question below.

So interestingly enough, IVF was cheaper and adoption isn't actually easy. For US IVF was more affordable, gave us the ability to have a biological child, and was easier for us. Adoption isn't simple or easy. Most people don't realize that. It's not as easy as going "ok let's adopt a child" it takes YEARS. there are home studies and psychological studies done on ther parents. Because we are military, we move A LOT. Which makes it hard to get anything completed. Before we have to move again.

To add to that, adopting a BABY is even more expensive, more rare, and more challenging. It would cost upwards of $50,000 to adopt a baby. And we wanted to have a BABY. This is a personal decision for every person. IVF was $16,000 for us.

I am going to say this and I hope this doesn't sound rude: if you come in contact with someone who is in a similar situation to us or struggling with infertility, saying "why don't you adopt instead" can be incredibly offensive and callous. I personally don't mind the question, ESPECIALLY in this setting, BUT others mind be incredibly offended and hurt by that question. Our goal with this AMA is to be as informative and open as possible, so I wanted to let you know.

I'm extremely myopic but not blind, so I can't imagine what it must be like. How would you handle a patient like your daughter if she were to survive past her earlier years?

Oh, great question! So Zellweger syndrome is a spectrum disorder. So the severity varies from child to child. There are many ways to communicate with people who are deafblind. some children function with cochlear implants, hearing aids and glasses. some can use walking canes and some only have minimal sight and hearing problems.

Our families all have their own unique ways of working with their children. Most of them go to school and can do household chores. The kids who live into their twenties can even have workplace opportunities.

I reached out to a good friend for some of her most recommended resources for deafblind communication.

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ETA: so the NCDB (national center for deafblindness) is a great place to learn about resources on how to comminicate and work and find resources for people with deafblindess. They have resources for each state.

nationaldb.or

What do you do for a living?

My husband is an active duty marine and I do lily's list and stay home with Lucy

i only briefly skimmed this, how is Renée Zellweger involved with this?

she's not