A Rare Kind of Strong

It has been a long time since we’ve shared a Dallas update. Not because there hasn’t been anything to say. Mostly because life has been full. Busy. Heavy at times. Hopeful at others. We are still juggling appointments, therapies, work, investment properties, and all the regular rhythms of being a family. There are still a lot of plates spinning over here. But today felt important. Today is Rare Disease Day.

When you have a child with a rare disease, a day like this carries a different weight. It is about awareness, yes. But it is also about belonging. It is about normalizing the fact that so many families are quietly navigating diagnoses most people have never heard of. Acute Necrotizing Encephalopathy, or ANE, is one of those. If you want to learn more about it, you can visit https://aneinternational.org. Raising awareness matters. So does telling the story.

Over the past several months, Dallas went through what we started calling “on and off weeks.” We needed language for it, so we borrowed colors. Green days were the good ones. She would engage. Eat by mouth. Smile more. Push forward in little but meaningful ways. Red days were harder. Tube feeds only. Minimal engagement. Almost like she was in standby mode, conserving energy we couldn’t see. Each stretch of green or red would last about a week, give or take a few days. Just long enough to get hopeful. Or discouraged. Or both.

We scheduled an EEG to rule out possible seizures, thinking that might explain the swings. Dallas has never had seizures, even through two episodes of ANE, but we wanted answers. The EEG was clear. No seizures. No hidden culprit. And then, because life sometimes surprises you in the best way, the green days started stacking up. More green. Fewer red.

We have now passed 30 to 35 consecutive green days. I hesitate to say it too loudly, but we are allowing ourselves to hope this might be a new baseline.

She wants to stand and with the help of her walker, she is taking steps. Her core is now stronger. Way stronger. She can sit and play with toys for more than 20 minutes without toppling over. In this stretch, she has had fewer than 10 tube feeds, and those were only when she was too tired to safely eat by mouth. The shift has been noticeable, steady and real.

Sleep remains unpredictable. She has also discovered she can crawl out of her bed. After a few daring escape attempts, we removed the bedframe and put the mattress directly on the floor. Safety first. Our girl is starting to become mobile now. Crawling more. Moving constantly. Sometimes it is hard to get her to stay still. After almost a year of being so still, I have to believe she is making up for lost time. She is ready to move and groove!

We recently traveled back to Levine Children’s Hospital in Charlotte for a follow up evaluation. The plan is to return in June for an inpatient stay of two to three weeks. Think of it as therapy boot camp – a good thing! Four to five hours a day of PT, OT, and speech. Intensive. Focused. Exactly what she needs right now. We are hopeful that kind of concentrated support could accelerate her recovery in powerful ways.

While we were at UNC Hospital, a member of Dallas’s care team, Annie, made a referral to the Make A Wish Foundation. We are thrilled to share that her wish is officially in process. More details will come later, but knowing that something joyful and magical is ahead for her and our family feels like light breaking through the clouds.

Rare Disease Day is about awareness. But for us, it is also about gratitude. For the doctors and therapists. For the nurses who remember her name. For friends who keep checking in. For green days. For progress that feels slow until you look back and realize how far she has come.

Mostly, it is about our girl… and today, she is green!

“It’s a beautiful day, don’t let it get away.” – U2

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