Community Spotlight: Dee and River Rolle

River Rolle

“There is an endearing tenderness in the love of a mother to a son that transcends all other affections of the heart,” said Washington Irvine. When watching River Rolle wriggle in his mother Dee’s lap while he sweetly places his hand on her chin and looks into her eyes, there is nothing more apparent than the love and affection between them.

River, meaning a large natural stream of water flowing, is a fitting name for an active boy full of energy and excitement. Dee describes River as “a typical three-year-old boy outside of him not walking.” River loves to pop wheelies in his wheelchair and cruise around wearing a superhero cape. He loves to exert his independence and is firmly in the toddler, “I want to do it myself phase.”

Despite his desire for independence, Dee has been River’s world since his birth. “It’s just been River and me. I’m a single, working parent,” says Dee. “River was born in February 2020, a month before the world shut down due to COVID-19, which meant that we were almost immediately isolated. It was hard in general being a new mom and to add COVID on top of it was an extra challenge.”

On top of these challenges, Dee started to notice concerning changes in River. “He was hitting all his milestones until about eight or nine months old. And he was standing at one point, and then all of a sudden he would not stand. He also never fully crawled,” said Dee. After many months of sleepless nights of worry, and meeting with a series of doctors, including pediatricians and neurologists, River was diagnosed with SMA Type 2 in December of 2021.

“We are blessed to have a wonderful neurologist named Dr. Shadé Moody at UTHealth Houston. Immediately following River’s diagnosis, Dr. Moody put together a comprehensive health team and a plan of action, including a pulmonologist, an occupational therapist, and getting River on Spinraza®.” Dee is incredibly thankful for Dr. Moody’s quick action, as he was diagnosed a month and a half before his second birthday, narrowly making the cutoff for this treatment. River was also born just a few months before Texas instituted newborn screening for SMA.

Dee says, “After River’s diagnosis, I wasn’t able to stay in the shock and sadness for long because although I have a supportive extended family, it was just the two of us living in Houston, so I had to snap into it and keep us going.”

However, just because Dee has kept going doesn’t mean it hasn’t been difficult. “I still have my moments. Even now, I have some grieving periods. But I went to the Cure SMA Annual Conference this year and being around and building community with other people and seeing how they’re living their lives and fulfilling their purpose has really helped me. My family came out for the end of the conference too.”

Speaking of family, Dee and River recently relocated to San Antonio, Texas to be closer to her parents so they can provide both her and River with support. Dee and River have also built community through social media. Dee shares River’s journey on his Instagram, aptly named @river_rocksandrolles. Dee says, “I created his Instagram as a healing thing for myself, but also to showcase River because I when was in the process of trying to figure out his diagnosis I stopped posting pictures of my baby. Because I’m a first-time mom, I wasn’t sure if his delays were my fault, and I was being inadequate.”

“Starting River’s Instagram and sharing his story has been healing for me and connected me to family, friends, and supporters across the country. River’s supporters are called River’s Rock Stars, and they’re awesome! I want to show the world my beautiful baby. Community is a beautiful thing for us.”

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