Thiago’s Little World: A Family’s Resilient Journey
Playing happily on the living room floor, supported by his specialized educator Laura, Thiago is a picture of youthful energy and curiosity. At just six years old, he’s been through more than most adults experience in a lifetime. Diagnosed with cerebellar atrophy at age five, Thiago’s journey has been marked by challenges and triumphs.
The first sign of trouble appeared when Thiago was only three months old. A simple eye test revealed a problem. He couldn’t follow a target with his eyes. Soon after, an MRI bravely revealed a likely diagnosis of blindness.
The years that followed were a complex blur of visits to specialists. From ophthalmologists to ENT doctors, Thiago’s parents navigated a world of medical unknowns. “We were in a sort of medical spiral, following what we were told, trusting the doctors, without knowing what actually caused his disability,” says Melinda, Thiago’s mom.
It wasn’t until Thiago reached the age of five that answers started to emerge. Another MRI confirmed that condition: cerebellar atrophy, a neurological disorder.
While the diagnosis illuminated the nature of the problem, it didn’t alleviate the emotional burden. Melinda, a hairstylist before becoming Thiago’s full-time care provider, describes the journey as “a long and difficult journey” filled with uncertainties.
Finding Laughter Through Trials
Thiago, however, remained the joyful center of their family. He learned sign language to communicate his needs and desires. Launching into an inclusive program during his preschool years, Thiago’s world expanded. The “world of his own”—his family’s affectionate name for the inclusive program—became a safe space Tricha to learn, grow and make friends alongside players with and without disabilities. This allowed his parents, Mark and Melinda, to find some much needed breathing room.
Now six years old, Thiago is thriving. He is receiving support from a plethora of services as part of a specialized medical team. His schedule is truly unique—a toolkit to meet every need. Monday brings Laura, the specialized educator, Tuesdays and Thursdays are dedicated to speech therapy with Anaelle who helps Thiago progress with the help of various medicines and therapies, followed by Friday when he works on rehabilitating his vision with an ophtalmologist Not forgetting his physiotherapist, who helps him refine his motor skills once or twice a week. While the challenges are evident, Thiago’s growth is a testament to his resilience. His parents proudly highlight every milestone.
“We know what he wants, what he likes or not.”
“Thiago’s world is filled with acceptance,” adds Melinda. “His older brother, Mathéo, also plays a crucial role.” She candidly explains the brotherly bond, calling it “hyperfusional.” While navigating
Their initial hesitation stemmed from the sheer practicalities of his condition. Money for medical bills, adaptive equipment, modifications around the house – the list felt endless. “Everything is much more expensive when dealing with multiple disabilities. It’s all tailor-made for Thiago,” Melinda clarifies.
Building a Future Filled with Hope
To help others facing similar challenges and advocate for Thiago’s needs, Melinda and her husband established the association, “Thiago’s Little World.” Their essay is not simply seeking funds. Melinda, his parents, and a dedicated team are dedicated to spreading awareness and understanding about multiple disabilities and advocating for those facing similar challenges.
The association has become their extended family. Melinda’s sister is devout secretary while Melinda’
* What were the initial signs that something was different with Thiago’s development?
## Thiago’s Journey: A Story of Resilience
**Interviewer:** Thank you for joining us today Melinda. Thiago’s story is one of strength and resilience in the face of incredible challenges. Can you tell us a little bit about Thiago’s early years and when you first noticed something was different?
**Melinda:** Certainly. Thiago was a happy and healthy baby, but when he was just three months old, we noticed he wasn’t tracking objects with his eyes. A simple eye test confirmed our fears, suggesting possible vision impairment. We were devastated. Soon after, an MRI gave us a likely diagnosis of blindness.
**Interviewer:** That must have been incredibly difficult news to receive. What followed?
**Melinda:** The years that followed were filled with uncertainty. We went from specialist to specialist, hoping for answers. Ophthalmologists, ENT doctors – we were on what felt like a never-ending medical carousel. [[1](https://www.neurology.org/doi/10.1212/WNL.0000000000209186)]helped us understand the cerebellar atrophy as the leading cause.
**Interviewer:** When did you finally receive a diagnosis, and how did it impact you as a family?
**Melinda:** It wasn’t until Thiago was five years old that we finally received a diagnosis of cerebellar atrophy. It was a relief to know what we were dealing with, but it didn’t make things any easier emotionally. It’s a long and difficult journey, filled with uncertainties.
**Interviewer:** Despite these challenges, Thiago remains a bright and joyful child. Can you tell us about some of the ways he’s adapted and thrived?
**Melinda:** Thiago is an incredible boy. He learned sign language to communicate, and he blossomed in an inclusive preschool program that we call “Thiago’s World”. It has been a safe space for him to learn, grow, and make friends.
**Interviewer:** That’s heartwarming to hear. What advice would you give to other families facing similar challenges?
**Melinda:** Stay positive, seek support, and never give up hope. Remember to celebrate the small victories and cherish every moment with your child. Thiago’s journey has taught us so much about strength and love.
