A daddy-daughter movie date that met the needs of AADC deficiency
A columnist takes his daughter to the movie theater for the first time
With popcorn and drinks in hand, I walked with my 5-year-old daughter, Rylae-Ann, into the dimly lit cinema. Because of her limitations, I feared the worst but hoped for the best.
My wife, Judy, was the one who began to voice concern about our daughter when she was born. We dismissed her worries as new parent jitters, but by the time Rylae-Ann was 3 months old, we could no longer ignore what we were seeing.
The answer to what was affecting Rylae-Ann didn’t come quickly, but it was faster than for many others in the rare disease community. When Rylae-Ann was 8 months old, Judy and I learned the devastating news: The symptoms were attributable to a rare genetic neurotransmitter disease known as aromatic l-amino acid decarboxylase (AADC) deficiency.
Many severe symptoms are associated with AADC deficiency, including what Judy and I had initially dismissed. The most significant one was oculogyric crises (OGC), an eye-movement disorder, which became longer and more intense as she got older. However, her anxiety and crying at every little sound, touch, or new face had a significant impact on us as parents.
Judy and I strategically picked where we went, what route we would take, and how long we would be away from our apartment. Rylae-Ann required constant care, and nothing seemed to soothe her.
Instead of taking on the challenges of venturing out, Judy and I opted to stay indoors instead of engaging in the family activities we thought we would be doing. Rylae-Ann’s anxiety made us anxious. If we did venture out, we didn’t go far, and a full backpack of everything accompanied us. We were also uneasy about disrupting others and the nosy glances we’d receive when Rylae-Ann would melt down.
A trip to the cinema seemed like an impossibility at the time.
Gene therapy brings results
Fortunately, Rylae-Ann received gene therapy when she was 18 months old. She gained movement and the independence of walking. Her OGC faded away, and progress in multiple areas began to happen. However, her anxiety continued to manifest.
Judy and I continued to work through behavior issues and develop strategies to help Rylae-Ann manage her anxiety. Yet, a trip to the cinema to see the latest must-see children’s movie still seemed unattainable.
That was until I saw an online advertisement for a kid’s cinema. The cinema was designed for parents to take young kids to the movies. The ad featured a picture of relaxing beds in front of a large movie screen with ball pits and slides lining the room.
This cinema was the perfect opportunity for Rylae-Ann to experience her first movie.
First cinema experience
Memories from Richard and Rylae-Ann’s first daddy-daughter movie date. (Photo by Richard E. Poulin III)
Rylae-Ann recently graduated from kindergarten, and summer break is now in full effect. I decided to take her on a test run while Judy spent a day recuperating with a facial and massage session.
To create a positive atmosphere and distract Rylae-Ann from the new environment, I involved her in every step of the process. She helped purchase the tickets, select our seats on the interactive screen, and choose the perfect popcorn.
Rylae-Ann held on to the tickets while I carried the tray of tasty treats. Eventually, we made it to the entrance. As we walked in, Rylae-Ann tensed up and a worried look fell over her face. But all that subsided once she saw the slides and the ball pits.
She immediately headed for the play areas. She went down the slides and jumped into the ball pits. She was so excited that she even played with other kids in the theater.
Once the movie started, Rylae-Ann and I found our seats, which were more like a bed. The room darkened, and the movie began. Despite the overwhelming nature of the deafening surround sound and the fast flicker of images, Rylae-Ann was glued in.
She got up several times during the movie, but so did the other kids in the cinema. I let her play and come back as she wished. She probably saw more of the ball pits than the movie, but it was a fantastic first daddy-daughter movie date from start to finish.
I learned that I should not be chasing ideas of typical family outings. Instead, I should look for environments that cater to my daughter’s needs. The experience may be different but no less meaningful. In some regards, life in the rare disease community can be even more exciting.
With summer break in full swing, Judy and I will continue seeking venues that cater to our daughter’s needs instead of following the paved path typical parents may follow.
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.
About the Author
Comments