How soft blocks became a cornerstone in our home

During a recent visit from another parent whose child has aromatic L-amino acid decarboxylase (AADC) deficiency, a small comment made my wife, Judy, and I pause.

“Your house looks like a kid’s gym!” she said with a laugh.

We looked around, and she was right. Soft blocks of every shape and color weren’t just in the playroom of our daughter, Rylae-Ann. They were scattered throughout the house, transformed into castles, obstacle courses, and makeshift furniture.

To an outsider, it might’ve looked like an indoor playground. But to us, these soft foam blocks represent something much more profound: hope, creativity, and an unyielding belief in progress.

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A new diagnosis, a new way forward

Rylae-Ann sits in her command center, building strength. (Photo by Richard E. Poulin III)

When Rylae-Ann was just a few months old, we noticed signs that something wasn’t quite right. After coming across a Facebook post describing similar symptoms and confirming the diagnosis with professor Paul Wuh-Liang Hwu in Taiwan, we learned that our precious girl had AADC deficiency, a rare neurotransmitter disorder. One of the most prominent challenges she faced was hypotonia, or low muscle tone.

Like many parents of rare disease children, we dove headfirst into research, looking for every possible way to support Rylae-Ann’s development. That’s when Judy discovered soft blocks.

She didn’t just order a few; she brought in an entire collection of high-quality foam blocks of all sizes and textures. At first, we saw them as a simple solution to some of Rylae-Ann’s issues, but soon they became much more than that.

Building the foundations

We started with something simple, yet extremely challenging for children with AADC deficiency: sitting. Judy created what we called a “command center” out of the blocks. It was a soft, supportive base that helped Rylae-Ann sit upright. We surrounded her with her favorite toys, musical instruments, and bright picture books. Everything was within reach, inviting her to engage and explore.

The blocks provided stability while her muscles grew stronger. As her strength improved, we changed the setup by removing one block, then another — each time giving her just a little more independence.

Sitting soon led to standing. But the blocks didn’t go away; they simply evolved with her needs.

We used them to create standing stations. Rylae-Ann would lean her little body against a tall block while tapping through her favorite iPad game or flipping through a storybook, using one hand for balance, one hand for discovery, all with Judy by her side.

Then came stepping. Then balancing. Then, one day, walking.

It wasn’t magic. It was a daily routine, a system built from love, consistency, and these now-beloved blocks.

Still growing, still playing

Rylae-Ann and her father play a game of navigating an obstacle course of soft blocks to have fun and continue to make progress. (Courtesy of Richard E. Poulin III)

Today, Rylae-Ann runs, laughs, dances, and climbs. Gene therapy gave her a new chance at life, and these soft blocks helped her claim it.

Now they’re a permanent part of our home. We build obstacle courses together, design hopscotch trails across the living room, and play one-legged balancing games just to see who can win. They’re no longer just therapy tools. They’re her playthings, her fitness gear, her daily dose of fun.

To any family navigating AADC deficiency, we want to share this observation: Progress doesn’t always come from medical breakthroughs alone. Sometimes it comes from the quiet, everyday tools you surround your child with.

For us, it came from a rainbow of soft foam blocks. So yes, our furniture might look more like a kids’ gym. But if you ask us, that’s precisely what a home for progress should look like.

Note: AADC 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 AADC News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aromatic l-amino acid decarboxylase deficiency.