Riley Carter

For Sheriden and Lane Carter, life in small-town Texas was full, busy, and grounded in family, faith, and community. Together with their three children, Madelyn, Riley, and Samuel, they built a life centered around love, service, and simple joys. Lane works as a firefighter and paramedic, while also running an EMS program at a local college. Sheriden runs a fashion and advocacy social media page where she shares her passions, family stories, and updates about Riley’s health. Before Riley was born, their life looked like many young families full of plans, routines, and dreams for the future. They met in college in 2015, married in 2017, and began building their family soon after.

When Riley was born, she seemed like a typical baby: happy, loved, and surrounded by family. Nothing initially felt different. “She was a pretty normal baby,” Sheriden shared. Riley was affectionate, loved physical touch, and had a calm, easygoing personality. She enjoyed playing independently, was deeply loving, and always drawn to closeness, cuddles, and connection. As Riley grew, subtle differences began to emerge. Around 15 months, Sheriden noticed that Riley wasn’t progressing with speech the way she had expected. “She had words… but then she wasn’t really trying to talk as much.” By 18 months, concerns grew. Riley wasn’t consistently using words, and by age two, her speech had not progressed.

She was eventually diagnosed with autism at 2.5 years old and began speech and occupational therapy. But Sheriden and Lane felt there was more to the story. “We really had to push for her care. We couldn’t stop until we got an answer.” After additional evaluations, including genetic testing panels and referrals, they were finally connected with specialists at Children’s Dallas.

On September 30, 2025, the Carter family received Riley’s diagnosis of Multiple Sulfatase Deficiency (MSD). The moment was overwhelming. “It felt like an out-of-body experience,” Sheriden said. Hearing about the severity of the condition, its progression, and the lack of a cure brought a flood of emotions: hopelessness, grief, and a loss of control. “You hear ‘life expectancy’… and you just think— what can we even do?” Lane described it as a blur, one that quickly shifted their perspective on life and the future. Suddenly, time felt fragile. “There’s a true gift in knowing your time is short,” Sheriden later shared. “Because you live in every moment. Every minute.”

In the days following Riley’s diagnosis, the Carters focused on what mattered most: being together. They took Riley to Great Wolf Lodge so she could swim, which is one of her favorite activities, and they later planned a trip to Disney. These weren’t just vacations; they were intentional moments of joy, connection, and memory-making. Riley loves water since swimming meets her sensory needs, brings her peace, and allows her to fully engage with the world. She also loves climbing, being outdoors, and exploring parks and beaches with her family. Receiving Riley’s diagnosis was not just emotionally difficult, it was also logistically overwhelming. Initially, the family encountered gaps in knowledge and sensitivity from providers. “They called with the diagnosis while I was shopping in Target,” Sheriden recalled. But everything changed when they were connected with a metabolic specialist who provided clarity, compassion, and a plan. “She gave us something to hold onto.” From that point forward, the Carters stepped into a new role of coordinating care, learning quickly, and becoming Riley’s strongest advocates.

Through it all, the Carter family has been surrounded by extraordinary support. Their small-town community, church family, Lane’s fire department, friends, schools, and even strangers have shown up in meaningful ways through meals, fundraisers, prayer cards, and simply being present. “So many people showed up,” they shared. Online communities have also provided connection and reminded them they are not alone in this journey. To know Riley is to love her. “She’s the happiest child you would ever meet,” Sheriden said. Riley is bright, resilient, affectionate, and determined. She teaches herself new skills and finds ways to overcome challenges. She is silly, loving, and full of joy. Though Riley is now nonverbal, her voice is still deeply felt. “Her love is known in a way that is more than words… her touch, her play, her snuggles, her giggles.” Sheriden shared the heartbreak of losing Riley’s spoken words: “What I would do to hear her voice again.” And yet, even in that loss, Riley continues to communicate love in powerful ways.

Faith is a cornerstone for the Carter family. “Without faith, we don’t know what we would be doing,” they shared. Their understanding of suffering has deepened, drawing them closer to their beliefs and helping them navigate uncertainty. For families newly facing an MSD diagnosis, the Carters offer this: “Take your time. Let your grief process look like your own. Protect your family’s space when needed. Accept support, but on your terms. Your child’s journey is your journey.”

Riley’s story is still unfolding. Her family believes deeply that she will make an impact; not necessarily in grand, visible ways, but in the way she teaches others to slow down, to love deeply, and to live fully in each moment. “What a joy it is to be your mom, Riley,” Sheriden shared. “You are going to change the world.”

Written By Emily (Gaines) Sandlin (Student Ambassador)