Through a Mother’s Eyes: Raising Matthew

By Emily Naum

June 2nd, 2025

In a world where we often find conversations about disability centered on tragedy or inspiration, Ms. Stanila offers a refreshingly honest perspective on raising her five-year-old son, Matthew, who lives with four rare diseases. Their story, shared on SARD Stories, challenges common misconceptions while highlighting the everyday realities of families navigating rare disease diagnoses.

You can listen to our full episode of SARD Stories: “Through a Mother’s eyes: Raising Matthew,” now on Spotify.

https://creators.spotify.com/pod/show/sardstories/episodes/Through-a-Mothers-Eyes-Raising-Matthew-e33ndlf

Matthew's Journey

Matthew's diagnoses came early—shortly after birth when concerns arose during pregnancy. Genetic testing revealed chromosome 8P deletion, followed by discoveries of adrenal insufficiency, agenesis of the corpus callosum, and intestinal malrotation. 

While Matthew doesn't walk or speak in traditional ways, his mother describes him as "a very happy boy" who enjoys socializing and communicates through his eyes and body language. He currently uses a wheelchair, and is learning how to use a communication device to navigate the world.

The early diagnosis of his conditions, while overwhelming, allowed the family to begin addressing Matthew's needs immediately. Unlike many rare disease families who endure years of medical uncertainty, Matthew's conditions were identified through genetic testing and follow-up screenings based on his primary diagnosis.

Beyond the "Special" Label

When we asked Ms. Stanila what she wished more people understood about Matthew’s conditions, she told us a powerful message. She challenges a common narrative surrounding parents of disabled children. "I want people to know that I'm not special and disabled and parents of disabled children are not special. They don't have superpowers. We just have to take care of our kids," she explains.

This perspective pushes back against sometimes well-meaning, but very harmful phrases that people say to parents whose kids have disabilities, such as "God doesn't give you more than you can handle"—words that, as Ms. Stanila notes, make her angry because they misunderstand the reality. "This is what we have to do. We have to be strong for our kids."

The Social Reality

The family's social circle has contracted since Matthew's diagnoses, not by choice but due to others' discomfort or inability to understand their routine. Ms. Stanila observes that people struggle with how to interact with Matthew because he doesn't walk, doesn't communicate verbally, and may not appear to understand in conventional ways.

"It's hard for people to know how to interact with him," she explains. "I want people to be able to talk to him even though he's not understanding or maybe he's not able to show that he understands, but he definitely likes when people talk to him and not just to me about him."

Moments of Pure Joy

Among the challenges, moments of breakthrough shine brightly. Ms. Stanila's voice transforms when describing Matthew's first ride on his adaptive bike two years ago. "He was so full of happiness. You could see the happiness in his eyes and his enjoyment of being able to ride that bike."

While Matthew can't pedal independently, the experience of riding—rather than being pushed in a stroller or wheelchair—represents a different kind of freedom. These moments underscore the family's philosophy of focusing on what Matthew can do rather than dwelling on limitations.

Fighting Misconceptions in Healthcare

Even within medical settings, the family faces dismissive attitudes. One of the moments that really stands out to Ms. Stanila was when Matthew experienced nausea from medication, his doctor questioned how Ms. Stanila could know Matthew felt nauseous if he couldn't verbally communicate it. This response reveals a fundamental misunderstanding of how parents learn to read their children's non-verbal cues.

"There are some things that you just know. Like we are parents, we can see how Matthew reacts to certain things," Ms. Stanila explains. "Even though he's not able to tell us things, he's still communicating with his body and with how he reacts in certain situations."

The Language of Understanding

Like many families working through disability, Ms. Stanila asks that they be treated like anyone else. They do not want to be treated specially; what is most important is treating Matthew like any other child. "Just talk to Matthew or about Matthew just like you would talk to any other kid, even if he's not able to tell you anything back or to answer your question. I mean, he answers your question, but with his eyes mostly."

The family doesn't want pity or apologies. "I'm not sad or I'm not upset that he's disabled. I mean, that's the way he is, and we've accepted that. And disability does not equal unhappiness or sadness." They have found happiness with Matthew as he is, focusing on joy rather than limitations.

A Philosophy to Live By

Living day by day has become the family's approach to navigating uncertainty. Long-term planning can be challenging when expectations might not align with reality, so they've learned to make short-term plans and find contentment in the present moment: “We live one day at a time because making plans for the future in regards to Matthew can be hard. Because sometimes if you make some expectations and then they don't happen, then it can be hard. But we just take it one day at a time and make short-term plans.”

This philosophy extends to their overall outlook on happiness. As Ms. Stanila puts it: "Happiness is a choice. Even if you are in a tough spot right now, try to find happiness because you can find happiness in yourself and you will be able to see all the good things around you." In a world that often struggles with how to interact with disability, Ms. Stanila's guidance is beautifully simple: happiness and disability can—and do—coexist.

A Call for Understanding

Some aspects of Matthew and his family’s story aren’t unique, rather, they are shared by many families navigating rare disease. But Ms. Stanila’s willingness to share these intimate details of their daily life offers valuable insights. Her message is clear: families like theirs don't need to be treated as inspiring or tragic. They need understanding, acceptance, and the simple recognition that their children—regardless of ability—deserve to be seen, acknowledged, and included.

The interview serves as a reminder that behind every rare disease diagnosis is a family learning to navigate a new reality, finding joy in unexpected moments, and advocating for their loved one's place in the world. Through Matthew's bright eyes and his mother's honest reflections, we see not a story of limitation, but one of adaptation, love, and the deservingness for understanding and acceptance.

You can follow Matthew’s journey on Instagram here: https://www.instagram.com/matthew8pjourney/

Thank you.