“Hey girls, let’s take a selfie!”
“OK!”
“But I don’t have my phone. So we have to use one of y’all’s.”
“Oh, OK.”
“This is fun, I’ve never taken a selfie in church before!”
“Y’all are nuts.”
“Well, Jesus told me to, so we gotta.”
I didn’t know why, and it’s unlike me to initiate a selfie. Then I felt like I was supposed use it to brag about my friend Patricia (left).
And then I remembered we’re in the midst of Rare Disease Week, and tomorrow, February 28, is Rare Disease Day and the anniversary of Miller’s diagnosis.
So I’m thinking, “OK but how do those tie in? Patricia has become a champion of Miller’s. I mean, the girl has secured a sponsorship and sold countless raffle tickets for Mulligans for Miller… She’s a friend… joined our Bible Study… understands the flip side of foster care… She’s been through some really hard things…
That’s it. She’s an underdog. She didn’t have a firm foundation growing up. The statistics of a woman in her situation are not favorable. But here she is, showing up and inviting Jesus into her heart. She’s embarking on a new chapter aimed at investing in the lives of others facing obstacles from her past. She’s a fighter.
And Miller fights every day to do things that we don’t give a second thought. The stats facing his diagnosis aren’t positive. And yet he faces each day without complaining, shining his little light in the world.
My friend Tara (on the right) is championing her children right now (pictured below). She and her hubby have one biological child and two adopted through foster care – her underdogs. She’s stepping up in a muddy season, filling the gaps her children need her to fill. Especially once the adoption glow fades.
And then I remembered something I saw earlier this week: God doesn’t give his toughest battles to His strongest soldiers. He uses the weak and the meek to change the world.
Enter Rare Disease Week (February 22 – March 2, 2022), tomorrow being Rare Disease Day and four years since we found out Miller has Leigh Syndrome. Four years, four months and fourteen days since we learned his life would never be “normal” after we received his unofficial diagnosis. And that long since we felt our lives were normal.
On September 14, 2017, we sat in the waiting room of pediatric neurology at Children’s Medical Center while Miller underwent an MRI. He was 10 months old. When it was complete, his neurologist and a geneticist came to tell us: based on the type of lesions on his basil ganglia, we can tell he has a mitochondrial disease, and it’s most likely terminal. I can still remember the neurologist being very calm, allowing us to process and ask what I’m sure were very obvious questions, and balk at the answers. I still shudder every time we walk by that waiting area.
Because mitochondrial diseases are rare and vary greatly, the doctors ordered a blood test for Josh, Miller and myself called Whole Exome Sequencing. It was only conducted in one lab in the U.S. at the time. We had to wait for insurance approval (out of pocket it was $15,000!), so it wasn’t until November we got orders to collect the samples; and February 28, 2018, we received Miller’s official diagnosis: Leigh Syndrome. “Testing identified a pathogenic variant (m.8993T>G) in the MT-ATP6 gene that has a 97.3% level of heteroplasmy.”
DID YOU KNOW: Rare Disease Day is actually on February 29th, the rarest day of the year? But outside of a Leap Year, it is observed the day before.
AND DID YOU KNOW: More than 300 million people worldwide are living with a rare disease? And that a rare disease is a condition that affects fewer than 200,000 people in the U.S.?
Rare. Uncommon. The road less traveled and all that. And yet so many people are facing similar battles around the world.
One Leigh’s mama has founded the Rare Village Foundation, CureSurf1, Cure Mito, and helped launch CureATP6. Through her efforts, organizations are collecting data from a web of parents to help researchers. Another Leigh’s mama is our go-to when modern medicine isn’t working. She guides us in holistic approaches and is able to dissect symptoms to their point of origin.
It is truly remarkable how people respond to trauma. Some cannot escape the cycle or patterns or pain. Some choose hope and allow it to motivate them. “It’ll make you or break you” – isn’t that the saying?
Patricia is using her past to help others. She’s making choices every day to be better and it’s a beautiful blessing to witness her metamorphosis first hand.
Tara is battling for her babies and it’s inspiring at the very least.
And Miller is making his own way. He hasn’t let Leigh’s define him – whether he knows it or not. He’s a joy and a gift and has a huge community behind him (AKA we have a huge community).
It’s evident through the support we’re receiving to raise funds for his rare disease. We’re fighting for a chance at a cure. We’ll never know if a cure is possible if we don’t try. And there’s no concrete deadline other than the days we lose not trying.
Tomorrow is Rare Disease Day. And it’s just another day to most. But it is also one more opportunity to be like Miller. Like Patricia. And Tara. We’re all taking life one day at a time, doing our best to do better each chance we get. If you feel so inclined, visit CureATP6 and check out the cuties facing Leigh Syndrome in the ATP6 gene. Help us raise awareness and funds and do better for our kids. They deserve a fighting chance.
Thank you for reading to this point. Sometimes I wonder why God gives me a word to share and am usually astounded when it bears fruit. Last time I shared, we connected with two new Leigh’s families – one from Iran, one from Portugal. Dads who were desperately searching for answers for their children. And through God’s word, shared on this little blog, those dads were introduced to hundreds of parents facing the same thing they’re experiencing now. It’s amazing how He works.
So here’s to following the Holy Spirit’s prompts to take a selfie in the sanctuary. And anything and everything that comes from it.
Happy Sunday, friends! Make it a good one. “Praise Him and He will continue to teach us to number our days.” Psalms 90:12
Love,
Jac