What you don't know about Apert syndrome + A birthday message from Sarah

It's complicated and requires a lot of ongoing care

Sarah as a baby in 2014 | Sunnyside Park in New Paris, IN | Photo credit: Ani Wallach

Above: Sarah wanted to share some thoughts with you on her birthday (which was Sunday, March 16th, 2025).

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This was a tough post for me to write, so I think I’ll just dive in to what I want to say.

Yesterday Sarah turned twelve. Since her birth in 2013, she has:

• undergone 10 surgeries, including a cranial vault reconstruction when she was six months old and three syndactyly releases to separate her fused fingers and toes;

• accrued 15 specialists, ranging from neurology and ophthalmology to counselor and music therapist;

• completed 5 years of outpatient physical therapy;

• graduated after 7 years of outpatient occupational therapy;

• had 4 teeth pulled (some primary, some permanent);

• worn partial braces for 2 years;

• finished 3 sleep studies to diagnose and manage her chronic obstructive sleep apnea;

• finished 3 years of intensive, in-home ABA therapy at 10 hours per week.

Apert syndrome is classified as a rare craniofacial diagnosis that affects 1 in 65,000 to 88,000 live births each year. There are no known statistics on mortality rates or life expectancy, though most people with Apert syndrome are estimated a lifespan comparable to the average population.

In a recent study, researchers concluded that most primary caregivers for a child with craniofacial conditions (which includes but is not limited to Apert syndrome) are mothers (58%), and that many of these primary caregivers are limited in the number of hours they can devote to paid work.¹

Sarah immediately after her cranial vault reconstruction surgery in 2013. She was six months old. | Riley Children’s Hospital in Indianapolis, IN.

I have estimated that Sarah’s ongoing care requires about 20 hours of unpaid work per week, which significantly impedes my ability to find a job outside our home. My need for flexibility, not just with hours worked but in the flow of schedule, is difficult to find in the American workforce.

Until five years ago, I worked as a paid freelance writer and national speaker for the Catholic market. When the global pandemic struck, I lost all scheduled speaking engagements for two solid years (which never fully recovered) and all but one of the periodicals I wrote for stopped paying their contributors or folded suddenly. For a number of reasons I plan to share in future essays, I chose to step out of religious writing and pivot to sharing stories for a mainstream audience.

Why am I telling you this? Well, friends, it’s simple but complicated:

I have a fire in my soul to write. From what I can tell, the stories and messages I share speak deeply to a lot of you. They touch your heart. They inspire you. They evoke emotions that get you thinking about your own lives and your own stories. They activate memories of your past, plus offer insight or clarity to something you’ve been grappling with.

Especially Sarah. Sarah does that. And she—along with all of my five kids—are often the muses for what I share with you. Not long ago, during a radio interview, the host dubbed this “The Sarah Effect,” and that stuck with me. What’s profound about this is that Sarah is often unaware of the effect she has on people. She’s simply being herself, shining that pure and good light in ordinary ways, like writing notes or offering words of encouragement.

When I spoke with her counselor about this, Heather told me, “This is great for Sarah’s self-esteem and to build social skills.”

Sarah wants to keep sharing with you, and so do I. We’ve decided together that we’re going to post longer (maybe five minute) videos for Substack subscribers, because she wants to go a little more into the hard things she’s been through and what it means for her to tell you about them.

And relying upon my husband’s income and health insurance keeps us afloat, but it has been hard for us financially these last five years. I know it has been for you, too, which is why it has taken me so long to write this. It’s because I struggle to ask for your help, knowing how difficult it is for me to find a few extra dollars to sponsor or donate or contribute to a worthy person or cause.

I want you to know that this is not intended to put any pressure on you. However you choose to show up in this space is needed and deeply valued. What I want to do is offer a few options for paid subscriptions to cover a wide range of people’s budgets. Or you can leave a one-time tip instead.

Below are several options to help support both my writing and our family. Even $5 per month significantly helps. Additionally, you can opt for $50 per year, or choose from among one of the following discounts:

Sometimes I think about the first time I opened the door after Sarah was born, and a total stranger stood on my doorstep with a $100 bill in hand. It felt wrong for me to accept it, especially since we didn’t know each other, but she said, “I heard about your daughter and wanted to help.” That’s when I realized that different people feel compelled to offer support in different ways.

So thank you for whatever way you are able to support Sarah, my writing, and our family. You mean so much to us. Truly.

Here’s where you can leave a one-time tip, too:

Sarah at age ten | Salomon Farm Park, 2023 | Photo credit: Joy Main

1. https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=https://thejns.org/pediatrics/view/journals/j-neurosurg-pediatr/30/2/article-p224.pdf&ved=2ahUKEwjhsPmz8_CLAxU2kIkEHdAVInkQFnoECAIQAQ&usg=AOvVaw0XYK6Lbr678BDAZ2FK7M8t