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I’m happy to report that surgery for our 1-year-old son, Ellis, went about as well as we could have hoped. Going in, we were told it could be the first of many, depending on what the surgeon found. Instead, the doctor was able to do everything needed in one go,…

How do you get away when you’re the caregiver of a medically complex child? Between appointments, medications, school, and the constant responsibility of keeping your child safe, a simple overnight trip can feel impossible. Caregiving often leaves little room for rest, connection, or spontaneity, and couples may find themselves…

We spent time with family last week for my brother’s wedding, and got to hear someone say something we’ve heard, and said ourselves, many times about how content and relaxed both of our kiddos, Emerson and Ellis, seem. “We always said that since Emerson has always been such a good…

My 4-year-old daughter, Emerson, and I were marveling at a tank of seahorses at the aquarium in San Diego recently when she erupted into a coughing fit, prompting me to pull her hand out of her mouth for what felt like the 27th time that afternoon. She’d been doing…

“1 … 2 … 3 … Go!” I take off down the sidewalk, a few yards ahead, before stopping. When I turn around, a grin spreads across my daughter’s face just before she tears off toward me. I excitedly cheer her on while her screams and giggles of excitement fill…

Over the last few months, my husband, Jamie, and I have been preparing for our 1-year-old son, Ellis, to undergo surgery. Experts have found that cryptorchidism, or the absence of at least one testicle from the scrotum, occurs in 86% to 100% of boys with Prader-Willi syndrome (PWS).

Nearly four years ago, my husband, Jamie, and I were introduced to Prader-Willi syndrome (PWS). It was a Monday evening in late September when we received an urgent email about a potential match through adoption, a 5-week-old baby girl with a PWS diagnosis. We were advised to look…

Last Friday’s lockdown at my son’s high school brought the kind of phone call no parent wants to receive. My 16-year-old son, Jake, who’s living with Prader-Willi syndrome (PWS), called to tell me he was outside by the football field in an equipment garage, and they were under lockdown…

Splashing around in the pool at a resort in Florida, our 1-year-old son, Ellis, was having the time of his life. He was all giggles as I pretended his infant pool lounger was a speedboat, jetting him through the water and spinning him in circles. “Three … two … one…

We have a nonnegotiable evening routine in our house: get the kids to sleep, spend some time resetting for the next day, then give growth hormone injections before going to bed ourselves. Ninety-nine percent of the time, both of our kiddos — Emerson, 4, and Ellis, 1 — sleep through…