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February 29, 2020 / JustinKays Porter

A New Normal

The fact that I haven’t written in almost two months says something very important about our life: we’ve reached a new normal. We are falling into new routines and new habits in Chicago, to the point where they don’t feel new anymore. And it’s good. It feels so good to have things that don’t feel new. I am a creature of habit, maybe more so than most, and I like that my life is back to having more elements of habit than newness.

Having said all that, we do have some news to share, both good and not-so-good (but don’t worry, no bad news). Millie’s treatments are continuing as normal as can be. We actually had a big milestone this week: we’ve been slowing weaning Millie off her pre-meds over the last month or so. This week was her first injection without any pre-meds and she didn’t have a reaction! I was a nervous wreck, but she did just fine like the tough little cookie she is. (Quick refresher: Millie had what amounts to a not uncommon allergic reaction to the injection back in October. Since then, she’s gotten an IV with anti-nausea meds, steroids, and Benadryl every week before the injection. It was quite the cocktail for her little body and it made injection days about twice as long as they would otherwise be). Needless to say, we are SO RELIEVED that things went well today. Because no one was sure if she would react, they still put in an IV before the injection as a precaution. Unless something unexpected happens (and it could), next week will be the first week in over four months that Millie won’t need an IV. This is HUGE!


PT is helping Millie gain more confidence. She gets around well with her walker, but needs a lot of prompting to take steps on her own. She got a new set of braces a few weeks ago that seem to be good for her and we think they will help push her in the right direction. I’ve also (finally) gotten good at carving time out of to do one on one PT activities and I’m getting better at making them fun. All things that will help in the long run, and it will be a long run for us. But we only have to take one day at a time and I’m also (finally) getting better at that. It’s been a big mental shift for me to try to stay in the moment (Or at least the hour. Or sometimes just the day…).

One of the more fun things happening in our lives is that Millie is talking up a storm. I was a little worried about a speech delay, but her pediatrician in Chicago advised that we wait until she’s 3 before we worry about it too much. With how much she’s been through in the last six months, it’s expected for the added stress to cause delays. I’m happy to report that everyday she’s coming up with new sounds, new words, more syllables and words together… she’s like a parrot! A really cute parrot, that is.


Nate is growing by leaps and bounds. He doesn’t do a traditional crawl, but he does the worm VERY well and gets into anything and everything. Thank goodness for doors and baby gates… He seems far more interested in pulling himself up and learning to stand than in crawling. He has become quite the little yogi, with moves I can only hope for in my wildest yoga dreams. Our floor is constantly strewn with food because Nate will only eat things that he feeds himself. He thoroughly enjoys throwing food overboard and when he does decide to eat, he only gets about a third of the food in his mouth. I can’t tell you the number of times I call for Flo to help me clean things up around here.


Now for the not-so-good news. We have known since we came to Chicago that our doctors at Stanford were working behind the scenes to try to get Stanford involved with the study somehow to bring us home. We’ve been pestering our study coordinator in Chicago for updates on how this is progressing, and we heard that Stanford was moving forward and might be up and running as an injection site within a few short months. This was very surprising (and definitely too good to be true, in hindsight) and we, unfortunately, let ourselves getting very excited about the possibility of coming home. One week after getting this news, we were told that Stanford had pulled out of the study entirely. We were confused, angry, devastated… it would have been much easier to receive this information without the hopeful news the week before.


While we still aren’t quite sure where the wires got crossed, Stanford becoming an injection site in a matter of months was never realistic. After many long conversations with our doctors at Stanford and the staff in Chicago, it looks like we will be staying in the Windy City for awhile. Stanford has pulled out of the study for now, but we are hopeful that there will be opportunities for us to come home in the future. A lot of things are in the works, and we are just going to ride it out and see what happens (See how I did that? Staying in the moment!).


And because we don’t have enough going on, we had to find a new place to live. Our lease ends March 31 and the owners are planning to sell. While they graciously offered for us to stay on month to month while it’s on the market, the thought of having people constantly in our space while coordinating around the naps and early bedtimes of two kids and Justin’s work from home schedule… ya. No. No thank you. So we’re moving! Knowing that we’ll be here for a while actually made this easier. We just signed a lease for a duplex in Lakeview East; we’ll be walking distance from the lake with a whole new area to explore! While the move itself is daunting, we think the new place will be a better fit for us and we’re excited.


So that’s what’s up. We also spent a wonderful week in Florida, have hosted more visitors, and spent a sunny week in California. Knowing that we’ll be in Chicago longer term, we’re actually planning to come back to California more often, probably every 4-5 weeks. We’ll be wracking up frequent flier miles and our kids will be traveling professionals. I hope you’re all doing well, I’ll try not to be silent for so long before my next update!




December 31, 2019 / JustinKays Porter


I’ve intended to write this post for a few weeks. I couldn’t get my act together to send out Christmas cards, or write a Christmas related post, so this is my last ditch effort for a post in 2019. I want to write something that sums up what this year has meant to us, but I’m not sure how to put that into words. I’m currently sitting in a hospital room, watching my 2.5 year old daughter nap after another IV, another injection, another traumatic morning, another round of thoughts that no one should have to go through this. Seems like as good a time as any to try to get my thoughts down on paper (e-paper?).
Five words to describe this year? Wonderful. Devastating. Traumatic. Exhausting. Hopeful. While I try my best to keep the first and last words at the forefront of my mind, I slip up. Despite my better intentions, sometimes I dwell on those scarier, less pleasant words. And that’s ok. This year has shown me the highest highs and the lowest lows and everything in between, but it has also shown me how strong my family is. How much love and hope there is in the world. How life doesn’t have to be all sunshine and rainbows to be beautiful.
We started the year pregnant with a baby boy on the way and a little girl who couldn’t walk but otherwise seemed fine. We’re closing out the year with a seven month old tank of a babe on the verge of crawling and a 2.5 year old receiving intensive experimental medical treatment that is working, for a condition that would have been considered untreatable just a year ago. Maybe the best word to describe this year is “journey”? Because what a journey it’s been.
My mind divides the year into a few distinct periods: blissful ignorance, doctors and specialists pre-diagnosis, Nate, diagnosis and dark days, and Chicago. The year started off uneventfully. I was pregnant and getting very large very quickly. Millie was doing great in all aspects except gross motor skills but no one (including me) was very worried about it. I’d hear stories frequently about late walkers and figured that was our girl. She would move when she was ready.
Then she got a cold, on a trip with my family to Kentucky and North Carolina. When she recovered, some interesting things were happening with her eyes that we decided to have checked out. That trip, that cold, that weird eye cross and twitch, started us on the path to here. With every doctor appointment, every new referral, every person that said my gut tells me something is going on here, I got more nervous. More afraid that either something was wrong with my girl or that we were on a wild goose chase for nothing and she would be terrified of doctors for the rest of her life (true story…). It helped that I was 7, 8, 9+ months pregnant during this phase. Baby boy gave my mind something else to worry about because I had to control over what was happening to Millie, but doctors and nurses and schedulers saw us and said, “Oh… Let’s see if we can get you in sooner. Before that next one arrives!”
And arrive he did. Baby Nate, what a joy. While unborn baby Nate gave my mind something to cling to during all the unknowns of the spring, the unknowns also kept me from dwelling on the coming labor, newborn haze, and helping Millie transition to being a big sister. All of which went remarkably well. Nate was born in the late hours of May 23, a cold rainy day, to an unmedicated mama and a very supportive daddy. The labor wasn’t short, but the final stage happened so fast no one was quite ready. I take that back: Nate was clearly ready! He almost literally flew out, with the cord around his neck and a quick (but unnecessary) and slightly panicked visit from the NICU team to clear him as just fine. That’s a story for another time! Nate’s newborn days passed in a cuddly sleep deprived haze, as most newborn days do. Summer weekend trips and two happy kids almost let me forget about impending doctor appointments.
A few weeks after Nate was born, Millie had that fateful MRI and panic set in for me. The weeks of waiting for additional tests and a diagnosis were long. And then I got the call. I’ll never forget it. I was getting in the car after getting a haircut on a Friday afternoon. Our geneticist at Stanford called and said she had news to share. Could we come up to Stanford that evening? The building would be closed but our neurologist and geneticist could meet us. And clearly wanted to. Describing what happened next is beyond words. Arriving at a dark, empty doctors office. Meeting with two doctors that had tears in their eyes before they even spoke. Knowing the worst was happening, but not knowing what that meant.
I couldn’t function. At 32 I quite literally couldn’t be alone, much less alone with my kids; it was all so much more than I could handle. My parents moved back to their house in San Jose to spend most days with me just to make sure we all made it through the mundane. I’m actually crying right now, remembering those days.
And then Chicago. We found out about the study and started the process of getting Millie involved. While it was a whole new kind of stress and worry, at least we had something to DO. I’m a doer; I think that was one of the hardest things about those first weeks. “This is happening to your daughter. All you can do is watch and try to keep her comfortable.” And then… CHICAGO.
Through all the appointments, surgeries, injections, unknowns, and traumas, we’ve been together. I have a letter board back in Campbell that says “Together is my favorite place to be.” And that is even more true now that when I wrote it so many months ago. I can honestly say that things are going better than we had any right to think they would. Is this what I thought my life would look like right no? Hell no. But we don’t get to chose what life gives us. All we can do is make the best of it.
Our life in Chicago is wonderful. Different, but wonderful. We’re so far from the life we built in Campbell, but we’re getting so much here. Not even including the amazing things Chicago has done for Millie; obviously there are those things. That’s why we’re here. But we’ve also gotten to know and deeply love our family in and around Chicago. We go on dates. We have an awesome babysitter who comes once a week. Once a week!!! Justin and I have been on more dates in Chicago than we have in the last few years at home. Justin works from home here, which equates to so much more time. We don’t have a car and walk everywhere (usually timing our outings with the weather!). We’ve gotten really good at getting kids, carseats, and strollers in and out of Ubers. These are all things I never thought I would say. And yet here we are!
BUT. But I miss my dog. I miss my family. I miss my backyard and the ocean and the mountains. I know we’re doing the right thing and it’s so awesome that we have the chance to save a life… BUT. Injection days are brutal. Exam days are even harder. It’s a lot, for all of us.
I truly believe that some phases of life you just have to survive; muscle your way through it and hope for better on the other side. Sometimes you make it out better and stronger, but sometimes you just make it. That was 2019 for us. And survive we did. But you know what I want for 2020? To THRIVE.
I may not have gotten Christmas cards out this year but I got (and loved!) all of yours. All your cards, gifts, love, prayers, and happy thoughts. Our picture may not be on your fridge, but I know you carry us in your hearts. I feel it, and I thank each of you for it.
December 16, 2019 / JustinKays Porter

These boots were made for walking!

Since our last post, we’ve had three more injections without issue. Millie is still getting her pre-meds via IV before the injection, but we haven’t had any more adverse reactions. Which is awesome! We are anxiously awaiting the day we can ditch the IV and the pre-meds altogether, but at this point we are thrilled to have the reactions under control.


In other news, Millie has a new walker, new orthotic braces, and new boots to wear with her braces. Justin and I were very unsure of how she would respond to all her new gear, but she is doing SO WELL. This is really the first time in her life that she can get around completely on her own and we are all loving her freedom. Except maybe Nate… but at least she hasn’t run him over yet!

Here is a video of her at the library and another of her talking about her walker.


A little backstory for the walker, braces, and boots: a symptom of MLD is a tightening of the joints. It starts with the ankles, then moves up to the knees, then hips, etc. I’m not really sure how or why this happens (and I should probably educate myself!), but the tightening has really only affected Millies ankles at this point. But having tight ankles also causes her to over-extend her knees and this contributes to her wonky walking. The braces force her ankles into a position that force her knees to be bent slightly at all times. We are working up to wearing them full time, but we’re taking it slow to make sure she doesn’t get too sore. So far she has been very accepting of them and we can see a huge difference in her posture and her stability. Finding a pair of shoes to fit with these braces was definitely a challenge… but some genius people designed boots specifically for this and they are actually cute! Not that that really matters, but you know what? It sure doesn’t hurt! The boots lace up but also have zippers that extend all the way around the toe so getting them on and off is super easy.

I don’t think I can really explain the joy we are finding in Millie’s newfound independence. She takes her walker from room to room, to different play areas, into the kitchen or the bathroom, to Justin’s office (which is in our bedroom) to say hi… we set up scavenger hunts for her to find snacks and treats and toys. It is nothing short of amazing, and her excitement is contagious.

In terms of other life updates, my sister Chels visited us for a few days at the end of November. It was a quick trip on her way to a work conference, but it was so good to see her. When we’re in California, Chels visits us two or three times a week and we’ve definitely been missing her here!


We also spent a week back home. Justin went to work everyday, and the kids and I spent most of our time cuddling with Flo and just enjoying our “other home”, as Millie calls it (our place in Chicago is our “new home”). We saw so many people I love in such a short time that I came back to Chicago feeling equal parts rejuvenated and so so so homesick. I just want to watch this video on repeat. I’m choosing to dwell on the rejuvenated feeling and run with it; I kind of feel like I’m starting a new leg of the journey. We’re settled in Chicago and we were able to quickly settle back into to our home and our life in Campbell. Time to embrace the “two homes” and fully appreciate each one for what it is.

IMG_2259 2

And this happy little dude is six months old already (and really, almost seven!). His personality is really starting to shine and his favorite things are Millie and giggling. And when we were back in Campbell, rolling around after Flo. Also the occasional dinosaur shriek!

Later this week Justin and I are going on a date to go ice skating (!!) and check out all the Christmas lights downtown. It sounded lovely and romantic until I checked the weather and realized it will only be about 15 degrees. And then I remembered I haven’t been ice skating since I was about ten and I am a hopeless spaz… but Justin promised to tow me around if I can’t figure it out. Wish us (and by us, I really mean me) luck!


November 26, 2019 / JustinKays Porter

Doctors are Smart (duh…)

The title of this post should not come as a surprise to anyone. Doctors are smart. Especially when it comes to medicine. Especially, especially when it comes to their chosen area of expertise in medicine. So I should probably listen to the doctors, shouldn’t I? Yes, you may all nod in enthusiastic agreement. Very good.

Last time we checked in we had some really great news (steps! Eating! Happy days!) and some less than ideal news (a pretty nasty reaction to the last two injections). After the first reaction, the doctors wanted to jump straight into an IV with some pretty intense pre meds. I, however, thought maybe the reaction was a fluke and was very hesitant to sign up for weekly IVs and steroids. After the first reaction, we decided to try a less invasive pre med schedule (with the doctors ok). But, to my disappointment, the liquid Benadryl wasn’t enough to keep the reaction at bay. This is where we left off; two bad reactions and a new plan.

Well I should have just listened to the doctors in the first place. The next week we went in, Millie got set up with the IV and a dose of Benadryl (antihistamine to block the reaction) and Prednisone (steroid to prep her body to accept the enzyme) and had no reaction. Yaay!! They kept us for observation for a little longer than normal, but Justin and Millie made it home in time for lunch. The injection last week was the same: Millie had the pre meds and no reaction and we made it home for lunch! And now I’m writing this post from the hospital, with my sweet girl napping.


Lurie Children’s, where we go on dates every Monday.

So all is well in Chicago. We’ve had some decidedly wintry weather (highs in the teens) and some abnormally warm weather (highs in the 40s). Justin and I are both surprised at how little the temperature changes throughout the day here; at home, a 20-30 degree temperature change in a day is normal. Here, a 5 degree change is normal. We’ve been getting outside most days and will continue to do so until the real winter weather sets in!


We’ve had some wonderful visitors. Nancy and Dirk spent a few days with us and Nancy rounded her stay out to a week.


Grancy and Papa Dirk visit Chicago


5 months with this handsome little chunk!

Mike joined us for a week while Justin flew home for work.



We’ve been exploring our neighborhood on foot a lot (two kids, no car, and a great neighborhood make it easy to stay close to home!). We got brave and took both kids on the L for an adventure to Millennium Park. And an adventure it was!

Millie has also started with her new physical therapy and we are very excited. The facility is amazing and we can’t wait to get her into some new routines with new things to work on. At home, she’s continuing to take steps and explore the new things her body can do. Lots of squats, playing on her tip toes, rolling around and crawling on the floor; all things that make us excited for what is to come.


Millie and Nate are both smiley, giggly kids that love to eat. They are both changing so much and it is so fun to watch them grow and learn and become themselves (if that makes sense?). We definitely have good days and bad days, but the good days outnumber the bad by a long shot!

With everything we have going on in our lives right now, I just want to take a step back and be grateful. Thanksgiving has always been my favorite holiday, and I feel like I have so much more to be thankful for this year. So much more than I ever thought possible. My heart is full and happy and so in love with my little family of warriors. Happy Thanksgiving, everyone! Eat your turkey, drink your Bushmill’s, and love your people ❤❤❤

And if you’re interested in some videos, here are a few links:

Millie teases Pa

Millie loves olives

These boots were made for walking!


Nate the Dino Baby (seriously, beware of your volume level!)

November 6, 2019 / JustinKays Porter

Happy Tears

We have big things happening in Chicago this morning. And over the last few weeks, really, but what’s happening this morning has turned me into a blubbering idiot. A very happy, slightly delirious (thanks for the party at 3 am, Nate…) blubbering mama; but I thought you might all like to join me in my current emotional state?


Millie took steps this morning. On her own, with a light hand on her back. And it was her idea. And she did it with a smile!! Ready, set, go… ***cue all the happy tears***

I know we’ve been radio silent for a few weeks, but I’ve been hesitant to share how things are going because, honestly, it seems too good to be true. So I’ve started with the biggest news and now I’ll back track to all the other things we’ve started to notice. We are cautiously very optimistic and it’s only fair to share our joy with our tribe. Because you know what? Our tribe is the best. You all continue to amaze and humble me in ways that I never expected.


This Monday marked treatment number 4. While the injections themselves are still very rough and the after effects the last two weeks were also very rough (more on that later), the Tuesday through Sunday sections of the weeks have just gotten better and better!

The first thing we noticed was that the drooling stopped. We weren’t even really aware of how much Millie was drooling until it stopped. Followed quickly by spitting food out way less; another thing that we had just attributed to her being a picky toddler. However, kids with MLD tend to have difficulty swallowing and difficulty controlling their mouth and throat muscles as the condition progresses. Having a kid that doesn’t drool constantly and actually wants to eat has been life changing. We didn’t realize how much of an issue this was for her or for us. But as the weeks have passed Millie has drooled less, spit out food less, and now she is like a bottomless pit… girlfriend will eat anything and everything and has consumed more calories in the last two weeks that the previous two months! She’s even got a little baby belly coming in and it couldn’t be cuter.

She also seems to be getting stronger and is a lot more willing to try new things physically. Without thinking, she will now bend her knees and pick things up off the floor, something she wouldn’t have even considered a few weeks ago. Millie will stand and play for long stretches without holding onto anything, and she know stands with her knees slightly bent. She seems a lot more confident and stable in general.

Dovetailing into that, Millie just seems happier. She’s more smiley and giggly. Her legs are ticklish and she has reflexes in her legs (two things she’s never had before). She woke up this morning saying “play” in bed and couldn’t wait to come upstairs. At bed time, she sits on the end of her bed (a mattress on the floor) and stands up to give hugs and kisses with a big smile. You guys, I’m so overwhelmed. The list goes on; I’ve started keeping a journal of all these small things were noticing. Our life has obviously changed hugely in the last few months, but the last few weeks have been amazing.


Now on to the less than ideal news. The last two injections have not been without issue. Last week, Millie threw up and broke out in hives. This week the hives were back with a low grade fever. The doctors aren’t overly concerned about this; it’s not an uncommon reaction with enzyme replacement therapies. Millie’s body sees the injected enzyme as a foreign object and launches an attack to try to “fight off” the enzymes, resulting in what appears to be an allergic reaction. Both times, we’ve spent the day in the hospital with IV Benadryl, steroids, and anti-nausea meds. She was fine by 4 or 5, but they were both pretty trying days.

Because this has happened to other kids, the doctors have a plan. We will give her pre-meds next week to “prime” her body for the injection and weaken her immune system slightly to let the enzymes in without a fight. Assuming this works, after a few weeks/months they should be able to phase out the pre-meds as her body gets used to the enzyme. The important thing here is that this is not unusual and the doctors aren’t worried about it other than the discomfort it causes.


Because I would be remiss not to talk about my champion little dude, Nate is doing great. He’s rolling around like crazy, has got quite the vocabulary of baby sounds going, and is just so mellow and smiley. Justin is convinced he will be crawling within the month… but I’m hoping for a little more time!!


In other news, it snowed last week. And it was beautiful. As long as I was able to watch it from the warmth of my kitchen windows and didn’t have to go outside… But you know what? I’m not even worried about the impending Chicago winter anymore. MY GIRL WALKED THIS MORNING.


October 23, 2019 / JustinKays Porter

Two Injections and Fall is Here!

Before I give you any updates, I have to say THANK YOU. Justin and I are so grateful for your generosity… If you know me, you know I am not usually at a loss for words. But I am quite literally speechless when I think of all the things you have done for us. The gifts, the love, the kind words, the support, the happy thoughts, the recommendations, it has all been received and so so so appreciated. I really can’t say anything other than thank you, even though it feels nowhere near enough. And please know that if I haven’t responded to your call/text/message, I will with time. I’m overwhelmed, but I’ll get there.

We are getting settled and our house is feeling more and more like a home everyday. We get so many Amazon deliveries that we are on a first name basis with our delivery people (again, thank you!!!). Pictures to come as soon as we figure out what to do with the mountains of cardboard that accumulate faster than yellow and red leaves on the sidewalk. It is definitely feeling like fall in Chicago; and by fall I mean what I would normally consider winter weather in California. This California girl is in for a ride awakening in the coming months!

Millie had her first treatment last Monday and her second treatment just a few days ago. The actual injection is pretty brutal, but it only lasts a minute and she recovers surprisingly quickly. As soon as the injection is finished, she is talking to the doctors and telling them (with a smile) to leave. “Byyyye!” This little girl is my hero and I am so impressed with how she continues to handle all of this. We think Millie has been more smiley and interactive than usual, but it’s hard to know if we are just reading into things. Back at home, she has been pretty afraid/unwilling to go play at the park for the last few months, and every day for the last ten days that we’ve walked by a play area she yells “play” and wants to get out

Ma has been here for a week helping out and visiting. While we haven’t been able to do too much fun stuff (2 kids, no car, and questionable weather put a damper on things!), Millie and Nate (and Justin and I!) have loved having her here. Justin was able to head west for some work events, and Ma and I survived just fine with the kiddos. Just today Nate has discovered that he can roll over multiple times in a row and actually move across the room. Which he loves and has me more than a little nervous about what else he will doscover, and how quickly he will discover it.

We are all doing well. Keep sending those positive vibes our way, we feel them every day ❤️

October 6, 2019 / JustinKays Porter


As many of you already know, we moved to Chicago. Today. And let me tell you, it’s been a day. Actually, let’s be real… it’s been the hardest few months I can imagine, so today was just a drop in the bucket. But we were for sure those people at the airport with WAY too many bags/strollers/carseats/etc and not enough arms! I had too many things to carry so I couldn’t even snap a picture of how ridiculous we were.
If this is coming to you out of left field, I’m including the original message we sent out as a kind of life update in this blog post. I’ve updated it so that it has more current information (quite literally with the words “update”. I know, I know… I’m real clever these days). I’ll try to post every few weeks to keep my loyal followers in the loop about what’s going on, but you know how good I am at keeping up with my blog. Maybe this time it will stick?
If you find yourself in Chicago, please let us know! And/or if you want to plan a trip, we’ve got plenty of space and our kids LOVE visitors.

A Letter to our Loved Ones (originally written 8/27/19, updated 10/6/19)

Hello loved ones,

We have some news to share. We suggest you get a fresh cup of coffee, crack a beer, maybe grab a box of tissues. Ready?

As some of you know, we have spent countless hours taking Amelia to visit specialist after specialist over the last six months. What started as concerns about walking delays and changes with her eyes has morphed into something a lot more serious. After each visit to a specialist, who would refer us to another, who would clear their schedule to see us as soon as possible, we grew more anxious and more nervous. And now, for better or worse, we have a working diagnosis.

Our sweet Millie has been diagnosed with late infantile metachromatic leukodystrophy (MLD). I’ll save you the googling and give you a brief description of the disorder. MLD is a rare genetic disorder. In a healthy brain, myelin coats nerve fibers and helps to transmit electrical signals throughout the body. Myelin breaks down to a series of proteins and lipids, including a lipid called sulfatides. Normally, an enzyme further breaks down the sulfatides. In kids with MLD, the gene that produces said enzyme is either absent or doesn’t work properly, causing a build up of sulfatides. An excess of sulfatides is toxic to the brain and disrupts the transmission of signals throughout the body. (Please keep in mind that I am NOT a geneticist or a neurologist… So I may not have that totally accurate.)

And I’ll save you further googling: children with MLD have an expected lifespan of 6 to 8 years. Sorry to drop that bomb, but there’s no way around it. As the sulfatides build up, children lose skills they have acquired and quality of life generally declines. It affects every child differently; with some declining very quickly and others more slowly. There are bright spots in this story, I promise. We just have to tell you the bad news first.

There is currently a phase II clinical trial for an enzyme replacement therapy (ERT) being conducted in Chicago. By injecting the synthetic enzyme weekly, it can start to break down the sulfatides. However, it is unclear if the enzyme will break down the sulfatides that are already built up, or only break down the new sulfatides as they are created, and at what rate the breakdown will occur. Either way, the goal is to prevent further damage to her beautiful little brain. There is hope that some of the damage may be reversed, but it’s too early in the trial to know if that is a viable hope. Our doctors at Stanford and the doctors and trial coordinators in Chicago think Millie is a good fit for the study. We are working on enrolling her in the study and, at least temporarily, to start calling Chicago home. Weekly injections will likely make it too difficult to travel back and forth, but the study coordinators are working to open additional sites, including one in LA, that we might be able to transfer to down the road.

***UPDATE: We’re in the study! We have been accepted into the Chicago study center and are in the process of moving to Chicago.***

There are still so many unknowns, but we are feeling a bit better as we formulate a plan. Had we been given this diagnosis six months ago, there would have been nothing we could do because the trial is so young. Had we been given this diagnosis six months from now, it would have likely progressed too far for us to qualify for the trial. As far as timing goes, things could be worse. And we are so grateful to all those doctors who cleared their schedules to figure this out. Someone has to be first to beat this. Why not our sweet Millie?

Millie is happy. She is the same sweet, smart, sometimes sassy girl she was last week, before our world was turned upside down. She is continuing to learn and grow, picking up new words every day. As difficult as it is, we are working hard to remember this and treat her the same. There have been a lot of tears, a lot of lost sleep, but just as much joy as there was last week. While we wait, all we can do is love her and hope. Hope that we get accepted into the trial. Hope that things happen quickly. Hope that it works. Hope that we aren’t too late. Hope that our love is enough for the time being. Hope that the science is there. Hope for a miracle.

While we wait, we ask that you send your love and keep us in your thoughts. If anyone knows someone working on this study, ask if they can fast track us (just kidding! Kind of…). If and when we need something more, we will ask. We are operating on the assumption that we will get into the study, and moving ourselves to Chicago on short notice is not going to be any small task.

I know this is a lot to process and we are still struggling to process it ourselves. I may sound like I have it together (that’s the beauty of the written word), but we are on an emotional rollercoaster over here. Life with a toddler and a baby is crazy enough; adding this to our lives has been overwhelming, to say the least. We’re just trying to take it one day at a time, trying to keep our heads above water, and trying to keep our kiddos happy.

Thank you for reading, I know it’s not easy. This journey is not going to be easy, and we are going to lean on our support systems in the days, months, and years to come. So thank you all in advance for being here for us.

We love you all,

Justin, Kay, Millie, & Nate

A few additional things to consider:

  • Please feel free to share this information with friends and loved ones, but we request that this not end up on social media. Thank you for understanding.
  • Yes, this is a genetic disorder. And yes, we are in the process of having Nate tested as well.
  • ***UPDATE: Nate does not have MLD! He is not even a carrier for the disorder, so it’s not something he will have to worry about in the future.***
  • The disorder is thought to progress more quickly when kids get sick or injured. While we would love visitors, we request that if you or anyone you’ve been in contact with recently was sick, please wait to visit. And please respect my frequent requests to wash and sanitize!


October 6, 2016 / JustinKays Porter

Burrows Progress

I know, I know… it’s been awhile. But we’ve been really, really, really busy! Instead of boring you with words or excuses, we’re just going to dive right in and show you some glorious progress photos.

The goal of this post was to take photos from the same vantage point as the original “before” pictures of the house and the photos from one year later (our house looked more or less the same in the one year later photos and right before we started this project, and that’s what we have to work with). But so many things have changed over the last four years that I found it difficult to figure out what I was looking at. I made the diagram below to show the vantage points of each set of pictures; hopefully it helps! And please excuse my amateur Adobe skills…


Alright, on to the photos!

View 1: From the entry, looking into the library. This room hasn’t changed much and at this point is serving as additional storage.



View 2: From the entry, looking toward the dining room and new additions.



View 3: Bedroom 1.



View 4: Bedroom 2.



View 5: Previously Bedroom 3, now master closet and laundry room (this is where things start to get weird!).



View 6: Previously kitchen, now looking into new kitchen.



View 7: Previously rear corner of the West Wing/ patio slab looking toward the garage, now from the great room looking toward the kitchen.



View 8: From the garage door (the location of the door hasn’t changed). Previously looking across the West Wing/patio slab, now through the kitchen toward the great room.



View 9: Previously, looking to the backyard from the edge of the West Wing/patio slab. Now, looking toward the backyard from the great room.



Like I said, we’ve been busy! Since the concrete pour, we’ve completed the framing, utilities (for the most part), and the roof. I wanted to get this post up now because things are about to start changing fast… we have insulation, sheet rock, tape/texture, and exterior stucco all scheduled within the next month! And then it will start to feel a lot more like a house and less like the bones of a house. But I do have to say, these are some damn good looking bones!

A few more photos to leave you with:


Master Bedroom


Master Closet (!!)




Great Room






April 3, 2016 / JustinKays Porter

Concrete Pour

3… 2… 1… We have concrete! That’s kind of like we have lift off, because we are officially out of the dirt. Not that we are done getting dirty, playing in the dirt, or dealing with a house full of dirt; we’re just done digging. For the time being.

My dad and Uncle Todd spent most of last week preparing for the pour, and Justin spent every night checking and double checking concrete quantities and orchestrating the concrete delivery. I just bribed people to come help us with donuts and coffee. It all seemed to work out, and come Friday at 7 am we had 8 able-bodied gentlemen willing to help us schlep the concrete hose around the yard, trowel the concrete into submission, and drink all my beer!

To be honest, before everything started I thought we had a few too many hands. But everyone stayed busy and we were very grateful to have all the help. We were finished pouring concrete by 10:30. And when I say we, I mean those 8 able-bodied gentlemen. I mostly took photos and kept everyone “hydrated.”


We started with the footing under the house.

Then moved to the two footings on the front porch…

Then to the stem wall and interior footings in the backyard…



And finally, the troweling. Lots of troweling!

Thanks to Justin’s careful planning, we were very close on our concrete numbers. Sadly, we were about one-third of a yard short of concrete! That was enough for one of the interior footings to not get poured. So close, yet so far… but a quick trip to the depot and a wheelbarrow later, we were all set.

Throughout the morning, our abandoned septic tank became a blessing in disguise. It was the perfect place to clean out concrete hoses and tools. Without that, some part of the yard would have become a huge mess.

The rest of the afternoon was spent troweling and removing most of the stakes holding the forms up. Throughout the day, we had lots of visitors stop by to observe and direct the activities. We even had an impromptu dinner party later in the evening!


Saturday morning, Justin, Matt, and my dad stripped the forms while Kimmi, my mom, and I started backfilling around the new footings. We had arranged to have someone come pick up all of our used forms (thank you craigslist and Uncle Jeff!), so the guys helped him load up the truck. Then it was backfill for all six of us. All that dirt had to go back into that hole.

Because we had given away our used forms, we were able to get away with one light load to the dump with miscellaneous leftover junk. At some point during the activities (I honestly don’t remember when or how), a water pipe had broken under the house. I don’t have details for you, but it happened and my dad and Justin went under the house into the “dead dirt” to swear at it and fix it. My mom and I continued to backfill and clean up, and by the end of the day we had working water and about 90 percent of our backfill was done.


And that, my friends, is how you pour a foundation and clean up after yourself in two days. With lots and lots of help!!



March 21, 2016 / JustinKays Porter

Starting to Take Shape

They tell me it’s now officially spring. So as I sit down to type, life almost feels normal with dinner simmering away, laundry tumbling around the machines, and the incessant sniffles that come with the season’s allergies. Then I walk outside to my construction zone of a yard to find Justin, only to remember that he is under the house digging footings… and then I realize this is my new normal!

Lots to catch up on. Since our last rendezvous, the slab was demo’d in the backyard.


The crawlspace and foundations were excavated for the addition.


The previously partially abandoned septic tank has been fully abandoned.


The new footings under the house and under the porch have been dug. (Sorry, no photos!)

Formwork and rebar for the footings have gone into the excavation.


Our concrete pour is scheduled for this Friday!!!

Now, if you just wanted a quick update, a handful of pictures, and an awkward anecdote from yours truly, you are free to stop reading and go back to your springtime duties (whatever they may be). If you’d like a few more details and photos, keep scrolling.

We had a crew out to demo the back patio slab in mid-February. With a bobcat and a jack-hammer attachment, a dump truck, and a handful of strong guys, they finished a job I was dreading in two days. Two days! Two days of madness, noise, and dust while I was toiling away at work. Sorry, neighbors… but it was so worth it!


The following week we had a crew out to cut our crawlspace down to grade and excavate the footings. It was more than slightly unnerving to see a giant excavator come through our side yard, but it made reality sink in that the project was under way.


After two and a half days of digging, hauling 40 yards of dirt away from our yard, and covering everything in plastic, it started raining. Literally, about twenty minutes after they finished the job the skies opened and it rained for two weeks. Dry January, dry February, then two weeks of solid downpour. Good for the snowpack and the summer, bad for the project!



When the rains stopped, we pumped the water out of the excavation and uncovered everything to let it all dry out. At this point, we noticed a big, rectangular-shaped soft spot between the interior footings. Justin did some digging around, and we realized that the old septic tank for the house was located at an awkward angle between our newly excavated footings. By some miracle, none of our footings or the excavation for our crawlspace led to this discovery. We couldn’t have positioned our footings better if we tried, and we didn’t know where the septic tank was to begin with!

Finding the tank wasn’t a big surprise. We knew the house had been on septic in the past and the previous owner had connected to the city sewer “under the table”… something we found out (and paid for) during the permitting process. We were fairly sure we would hit the tank at some point, but weren’t sure where it would be, what state it would be in, or what we would have to do about it.

Turns out, we found it roughly where Justin thought it was, partially abandoned (i.e., about a quarter full with a bunch of rubbish thrown in the upper three-quarters). After some phone calls and some hemming and hawing, we know we had to fully abandon the thing (i.e., completely empty it). Justin and my dad did most of the work in a day. And while I can’t speak from personal experience, I can say that shoveling sh*t did not look like a fun experience…


Next, Justin busted out the bottom of the concrete tank with a jackhammer. Another activity that looked not so fun. A few trips to the dump, a city inspection of the busted out tank bottom, and a look of gravel, the tank had been properly abandoned. And all I can say to these two guys is thank you. Because, for lack of a better word, YUCK.


With that behind us, we cleaned up the footing excavations and covered everything back up for another round of rainy weather. After another week of rain, my Uncle Todd’s return from a trip to Hawaii, and my dad’s second retirement, we were off and running to get the forms set and the rebar in. And when I say “we”, I really mean Justin, my dad, and my Uncle Todd. So, yet again, I must say thank you!

Nancy and Dirk, my parents, and Todd all came out on Saturday to help us finish things up. With all the help, we’re gearing up for our pre-pour city inspection on Wednesday. Think happy thoughts, and hopefully our pour on Friday will go smoothly!


Seeing the forms go up has been really fun. I run around the giant hole in our backyard (now bordered by plywood and 2x4s) and imagine myself standing in our new kitchen, in the laundry room, looking out the glass door from the master into the yard. I’m having a great time daydreaming and I’m sure anyone watching me thinks I’ve completely lost my mind. Flo follows me around and seems to have fun imagining with me, but Justin is probably tired of playing my game of “guess where I’m standing now?!” I still enjoy it though 🙂

And for those of you who made it to the end of this long-winded, picture-loaded post, you deserve a prize!! xoxo