Skip to content
October 6, 2019 / JustinKays Porter

Chicago

IMG_2321
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.
IMG_2362IMG_2687
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?
IMG_2215IMG_2343
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.
IMG_2289

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!

IMG_2324IMG_2341

4 Comments

Leave a Comment
  1. Clara Meyers / Oct 27 2019 5:40 pm

    Welcome to Chicago! I’m glad Bob has connected with you. Sending you love from the Meyers family!

  2. Chelsey Perry / Oct 7 2019 2:19 pm

    Thank you for starting the blog up again! Cannot believe your last post was three years ago and how different Burrows looks now. Can’t wait to visit you in Chicago! Love you!

  3. Linda and Dan Forbes / Oct 7 2019 9:01 am

    Thanks for the blog post!! Looks like you are starting out from scratch!! Like the college days!! Apartment looks nice!! Hang in there we are thinking of you all the time!! Xoxo 

    Sent from Yahoo Mail for iPhone

  4. kimberlybishop3092 / Oct 7 2019 3:54 am

    I’m so happy that you’re blogging again so we can all keep up with Millie and your Chicago adventures. We love you! XOXO

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: