For our family, 2024 was a year of milestones and overcoming challenges. It was a good year, and progress was OK. But ever since our daughter, Rylae-Ann, was diagnosed with the rare disease aromatic l-amino acid decarboxylase (AADC) deficiency, “good” and “OK” have not been enough for…
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The day before our daughter, Rylae-Ann, recently departed Thailand to visit family in the U.S., we opened Christmas presents together. My wife, Judy, had prepared several thoughtful gifts, each carefully chosen to balance Rylae-Ann’s developmental goals with fun and engagement. Rylae-Ann was born with aromatic l-amino acid…
December had only just begun when my wife, Judy, and I decided Santa should come early for our daughter, Rylae-Ann. Over the years, we’ve adapted holidays and events to make them more meaningful for our family, but this year we decided to try something new — and a bit challenging.
On Christmas Day in 2018, our lives changed forever when our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency. My wife, Judy, wondered if she’d ever hold our hands and walk along the beach like we’d dreamed. Despite the dismal prognosis…
When our daughter, Rylae-Ann, was born with aromatic l-amino acid decarboxylase (AADC) deficiency, we were handed a long list of symptoms that felt more like a set of instructions on what she couldn’t do. It was devastating. Bubble baths were a fun bonding time for…
Thanksgiving is a cherished family holiday, and this year, we have so much good news to celebrate and be thankful for. However, in late October, we learned the sad news that our daughter’s grandpa had passed away. Tim Hergenroether was a proud U.S. Marine who served his country for more…
Six years ago, on Nov. 13, 2019, our daughter Rylae-Ann received a second chance at life. Every year since, we’ve celebrated it as her “Reborn Day,” when we reflect and remember how far she’s come. This year’s celebration, however, was an extraordinary moment of personal and national significance. When Rylae-Ann…
When my wife, Judy, became a certified special education teacher, we never imagined how crucial her expertise would become in our personal lives until our daughter, Rylae-Ann, was diagnosed with aromatic l-amino acid decarboxylase (AADC) deficiency, a rare neurotransmitter disorder. Even with Judy’s background, we had a…
Our family’s approach to holidays and adventures centers on celebrating in ways that support our daughter, Rylae-Ann. Since her diagnosis of aromatic l-amino acid decarboxylase (AADC) deficiency, a rare genetic disorder affecting neurotransmitter production, my wife, Judy, and I have adapted our holidays to Rylae-Ann’s unique…
Raising our daughter, Rylae-Ann, has been an incredible journey full of lessons and challenges, requiring use to consistently reshape our expectations. With more than a decade of teaching experience, I thought I was prepared for the ups and downs of parenting, but nothing truly prepared me for raising a child…
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