Why we said yes to adopting 2 children with Prader-Willi syndrome
A cosmic feeling led my husband and me to Emerson and Ellis
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Four years ago, my husband, Jamie, and I had never heard of Prader-Willi syndrome (PWS). We didn’t know it existed. And we certainly didn’t know that an email received at 10 p.m. on a Tuesday in late September would be the start of the most beautiful, challenging, and life-changing journey we’ve ever taken.
We had always planned to build our family through adoption. After receiving our home study approval in June 2022, we settled in for what we expected to be a long wait. It turned out to be about three months. One evening in late September, we were copied on an email containing the profile of a 5-week-old baby girl. Her primary diagnosis: Prader-Willi syndrome.
A quick Google search gave us the 10,000-foot view. We talked briefly, then tabled it. There was no way we’d be selected, right? We were newly approved, and surely dozens of other families had gotten the same email.
It wasn’t even 9 a.m. the next morning, and I’d just gotten to the office, logged on, and started replying to a message when my phone buzzed. It was our social worker.
“Good morning! Did you see the email last night? Have you had a chance to discuss?”
It’s hard to explain, but it felt like something cosmically clicked into place. In that moment, I knew we were going to be parents.
The call that changed everything
We conference-called Jamie, and our social worker walked us through what she knew. The baby was in a neonatal intensive care unit in Seattle. (We’re in Ohio.) She was 5 weeks old and feeding orally with fortified formula, though a gastrostomy tube was being considered. She had significant hypotonia (a new word we added to our vocabulary, meaning low muscle tone), which is common in newborns with PWS and can affect everything from feeding to physical development.
Our social worker explained that the genetic change is on chromosome 15. She advised us that this condition sits on a spectrum, and reminded us that Google will likely show worst-case scenarios. The crux of her message: Educate yourselves, but don’t spiral.
Oh, and we had until noon to decide.
She encouraged us to hang up, breathe, and talk it over. What she didn’t know was that we were both an immediate “yes” before she even finished the sentence. We waited an hour to call her back so it looked like we’d done our due diligence.
That evening at 6 p.m., the phone buzzed again.
“Hi, Trevor. Hi, Jamie. I’m calling to let you know — you’ve matched. You’re parents!”
Fast forward to today
Our baby girl, Emerson, is smart, stubborn, and silly. She loves dancing, taking walks, “Bluey,” and her Little People toys. Her laugh is contagious, and her hugs will make you melt. She is every bit as extraordinary as that first phone call suggested she would be.
Parenting is everything people tell you it will be. It’s remarkable and it’s exhausting. Parenting a child with PWS is all that, plus another layer of complexity. The appointments, the therapies, the early intervention plans, the navigation of insurances, the continuous learning curve — it’s a lot. But here’s what surprises most people when we describe it: The wins feel bigger. Every milestone, every smile, every new skill hits differently when you’ve watched your kiddo work so hard for them. It’s insane how fast the time has gone by. She’s come so far.
When people ask us why we’d do it again, knowing everything we know and understanding that so much remains unknown, the answer is pretty simple: because we’d seen what’s possible when you say yes.
Last February, we were placed with our son, Ellis, also through adoption. He also has PWS. This wasn’t intentional; we weren’t seeking out another PWS placement. But when that email containing his profile pinged in our inbox, that cosmic feeling was back. It’s crazy how much we’ve learned in nearly four years. This time, we had a much clearer idea of what we were walking into. So we ran in.
Allow me to introduce our family
I’m Trevor, and my husband is Jamie. We are the proud parents of Emerson and Ellis, both of whom are navigating life with PWS. We’re not medical professionals. We’re not experts in anything except our own family’s experience and the particular kind of problem-solving that comes from raising two children with the same rare genetic condition.
I plan to write honestly about what that looks like: the learning, the hard days, the resources, the moments that catch you off guard in the best way. As devoted advocates for our kiddos and this community, we hope that by sharing our experience, we can ensure no one feels alone.
It’s nice to meet you!
Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
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