Moving Story of Otteroo Baby’s Struggles With AADC

It was Pinterest that first led the Rodriquez-Pena family to Otteroo. Shillan Rodriguez-Pena, the mother of 20-month-old Rian who suffers from a rare condition called AADC (Aromatic Amino Decarboxylase Deficiency), came across Otteroo when she was searching for swimming supports for her daughter and was immediately intrigued.

“I have always been aware of the many benefits that being in the water can have on the body and knew that I needed to get Rian in the pool,” she said.

AADC is a genetically inherited neurological disorder that affects the brain’s ability to produce two key neurotransmitters, thereby preventing children from being able to fully develop their motor skills. AADC is so rare that only about 100 children have been diagnosed with AADC in the world but those who are, struggle with a number of movement disorders from a very early age.

“AADC has unfortunately left Rian in the severe category,” says Shillan. Rian has had only minor improvements in motor developments since she was about 2 months old. Rian still struggles with head and neck control. “This has impaired, impeded and impacted every aspect of our family life as Rian is completely dependent on us to care and support her in all situations,” says her mother.

Shillan Rodriguez-Pena talked to us about how Otteroo is making a difference in their family’s life.

How was Rian’s first swim in the Otteroo?

The first time Rian went swimming, she was 9 months old. This was also the first time she used the Otteroo, and the first time that our family could enjoy something physical all together. It was magical and I felt like crying. The simple and marvelous everyday tasks we take for granted are impossible for Rian so seeing my family have fun together, and not have Rian’s needs highlighted was amazing. The Otteroo is a game changer for us and it is pretty obvious just how happy Rian is when using it.

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How can you tell Rian likes the Otteroo?

Rian often holds her hands in tight fists, however when in the water with the Otteroo, I have noticed that she relaxes her hands and opens them. Rian is also fearful of many situations, and, as a result, her little body tenses up in rigid positions.

However when using the Otteroo, she remains calm and it is very obvious how much she likes feeling and enjoying the water. She laughs when we help her to splash the water, which in turn is also helping her learn concepts, such as cause and effect. She anticipates when we will start splashing with her and she has so much fun partaking in water play.

Would you recommend our product to other mothers? Why?

I have connected with many other families who also have children who face challenges and I have introduced them to the Otteroo – many have purchased it and cannot express just how much they are enjoying it! For children with limitations, the Otteroo does not simply give them a flotation device, it gives them independence, inclusion and introduction to exploration of how movement feels in the water.

I truly believe that all babies and young toddlers, typically developing or not, would benefit from using the Otteroo as the social, emotional and physical experience it provides is beyond compare.

Julie Forbes

Julie Forbes

Julie Kroenig Forbes graduated Magna Cum Laude from the University of Missouri School of Journalism. She spent the next 10 years working as a news anchor and reporter in various cities, most recently in Nashville, Tennessee. She now lives in Northern California with her husband and four kids.
Julie Forbes