Miller and Sissy Update, Part 1

I kept thinking I was going to sit down and churn out an update on all things Miller, fostering, and more, but life happened. And then more life. We have lots of stuff to share, so check back for Part 2 and possibly 3 shortly, but for now, here goes nothin!

First and foremost, our boy is healthy. We made it through another cold and flu season with the added complications of the pandemic seemingly unscathed. Y’all, 2020 in all its dumpster fire glory was the FIRST YEAR OF MILLER’S LIFE WITHOUT A HOSPITAL STINT. Praise be! And now halfway through 2021 we’re keeping with the same momentum. Here’s a short recap for those following along:

2016 – 9/27 I went into the hospital and camped out; 11/3 Miller was born and admitted into the NICU; 12/1 he came home!

2017 – Labor Day weekend we finally got someone to listen/watch proof of his Infantile Spasms (seizures) and we ended up admitted in Children’s Medical Center in Dallas for a myriad of tests over five days which led to a preliminary diagnosis of a mitochondrial disease.

2018 – Valentine’s Day was his last seizure to date; 2/28 we received the official diagnosis; the Monday after Easter Miller was diagnosed with pneumonia after a 106* fever and spent 3 nights at Hendrick Medical Center in Abilene.

2019 – in early March, Miller got a stomach bug he couldn’t kick and became severely dehydrated. He spent three days at Hendrick again.

2020 – NADA. In February he was under the weather with a sinus infection of sorts and the antibiotic kicked his booty, but we got to stay home through it all.

I’ve done a poor job of celebrating how big of a deal this is, but it really is monumental. Miller was diagnosed 3.25 years ago and has proven his resiliency time and time again. Thank you, Jesus.

In other news, Mill’s been busy being a big brother to now five little loves that have graced our home since our last update, but more on that later. Once piece of the exciting news we had last year – has it really been that long?! Also, how is it June!? But I digress – Miller Man’s Make-A-Wish has been indefinitely postponed due to stupid COVID. However, he’s had a few significant developments since September’s blog, most importantly…

HOPE FOR A CURE!!!

Second only to his current status, WE HAVE BIG NEWS: We are currently raising funds for a research project specific to Miller’s mutation of Leigh Syndrome that could lead a clinical trial and then on to a CURE.

Yeah… It’s big. HUGE.

So we have a community of Leigh’s parents that network and support each other and relay information. In this group, a hero of a mom, Kasey Woleben, collaborated with a researcher to initiate a study for her son’s form of Leigh’s, Surf1. To reiterate, while Leigh’s is uber rare, within the realm of Leigh Syndrome, there are 300 known variations of the disease, including both genetic and nuclear occurrences. You can watch more of their story here (click on the hands in gloves) – it’s impressive and moving. Her son Will is amazing, and Kasey is his biggest advocate.

Now that Surf1 is awaiting FDA approval and then on to an actual trial on humans, Kasey pitched that the researcher branch into ATP6 – Miller’s mutation! So WE ARE RAISING FUNDS! You can see our boy’s beautiful face along with lots of other cuties fighting ATP6 of the mtDNA in the 8993T>g gene on the website.

In March, we were able to sit in on a Zoom call with the researcher of the Steven Gray Lab of UT Southwestern. In a nutshell, the clinical trial is attempting to utilize gene therapy to silence and replace the low-functioning protein within the mitochondria with a nucleus-coded gene. Seems simple enough, right?

Thankfully we don’t have to understand all of this, but we do need help raising $250,000 to initiate this project and then pray it gets picked up by big pharma to cover the rest of the trial’s needs. The fundraising website is here. We’re currently at 5% of our goal. Once we have funds raised, the researcher can get crackin’, create a mouse model, and see if the theory the researcher has developed works.

This could mean a cure for our boy. It’s the biggest deal there could be for Miller the Man. Please consider donating, but whether you do or not, please please PLEASE share the link to the fundraising page. We want to get the ball rolling!

And because that’s a pretty large bombshell, I think I’ll sign off here. As always, thank you all for following along with the adventures of Miller David. We are thankful and hopeful.

We have quite a few more updates to share soon, so stay tuned! We love y’all!!!

Much love,

Jacque, Josh and Miller