Matthew's Story

So many people have shared how my son Matthew’s statue has inspired and comforted them. Because of this, I feel compelled to tell his story—how he faced incredible challenges and triumphs in his short life and how his statue came to be. I hope that knowing his journey will add deeper meaning to the statue and bless those who read about him.

Caring for Matthew taught me that every life is a cherished miracle. His birth was a miracle, his life was a miracle, and even his passing was a miracle. A few months after he came into our lives, I read a magazine article about a mother who chose to abort her unborn child due to a disability. I was shocked. I don’t know all the reasons she made that decision, but the article suggested she feared her life would be disrupted. In a remarkable way, I knew beforehand that Matthew would be born with severe disabilities. Given that knowledge, she and I made very different choices. I am so grateful for mine—having Matthew changed my life and the lives of many others.

A Vision of Matthew
Four years before Matthew was born, I had a dream. I saw a beautiful red-haired boy, but when I looked into his brain, I saw damage. My horror turned to relief as I saw it would eventually heal. A year later, we had a beautiful red-haired daughter. Many thought my dream had been mistaken, but three years later, the miracle came true—Matthew was born.

Matthew’s Birth and the Unexpected Diagnosis
My wife, Anneke, had delivered five healthy children, and her pregnancy with Matthew seemed just as normal. Only hours before delivery did we notice anything unusual. When he was born, it was immediately clear something was wrong. The doctors rushed him to the NICU, and Anneke and I sat alone, bewildered and scared.

Finally, our longtime neighbor—also Matthew’s pediatrician—came in with tears in his eyes. He told us Matthew had suffered severe brain damage and would not survive. But I held onto hope. I had seen him alive in my dream. I told our doctor, "Matthew is going to live." That hope sustained me.

A neurologist soon visited us. She systematically outlined the dire prognosis—seizures, paralysis, and worsening conditions. She even hinted that letting him die might be best. Her words made me furious. Though she tried to strip away all hope, I knew Matthew would grow and improve. Still, I needed a miracle to accept the burden ahead.

A Father's Prayer
When I first saw Matthew in the NICU, he was covered in tubes and wires, struggling for life. Watching him seize and gasp for air was almost unbearable. Driving home that night, I was overwhelmed. Did I have the strength to see my son suffer?

At home, I fell to my knees and prayed as I had never prayed before. I pleaded for Matthew’s healing, for his suffering to ease, and for the strength to endure. Then, unexpectedly, I received an answer—a miracle.

I remembered my grandparents' loss of their golden-haired daughter at age four. That night, in my prayer, I felt the depth of their sorrow as if it were my own. My tears flowed. And then, an overwhelming gratitude filled me: Thank you, God, for letting Matthew live. No matter how hard it gets, thank you for letting him live.

That gratitude never left me. It carried me through Matthew’s ten and a half years. No matter how difficult things became, I always remembered that prayer.

The Fight for Survival
For three weeks, Anneke and I spent every moment in the NICU, watching Matthew struggle. We longed to hold him, but all we could do was sit by his incubator, whispering loving words through the plastic. Finally, after a week and a half, they let us hold him—with all his tubes still attached. It was a moment of pure gratitude.

Matthew’s seizures were nearly constant at first but slowly became less frequent. His breathing strengthened, but his lungs still weren’t strong enough for the doctors to remove the respirator. They warned us that taking it out might stop his breathing completely. It was our first major medical decision.

We prayed. And we felt peace—Matthew was ready. The doctors removed the tube. I watched, holding my breath, as he struggled to take his first unaided breath. Then another. His oxygen levels were low, but he was breathing on his own. That confirmation reassured me: he would live and grow.

Going Home—A New Life
After 21 days in the NICU, Matthew was finally strong enough to go home. Our family of seven quickly adjusted to a new normal—one that required constant care. Anneke spent hours breastfeeding him in slow, careful sessions to keep him from choking. He needed to be held constantly to prevent his muscles from overextending. When Anneke couldn’t hold him, one of us did.

At night, we kept him beside us, a hand always on him. When his muscles tensed, we would gently hold him in a fetal position until he relaxed. This routine continued night after night, year after year. Anneke prayed every evening for strength. I woke up exhausted, but she often told me she felt miraculously renewed.

A Terrifying Trip
About a month after bringing Matthew home, I won tickets to a football game in San Diego. I convinced Anneke to go, believing Matthew was strong enough to travel.

At the game, he sat on my lap peacefully, but later that night, he struggled to nurse. He would pass out, his breathing dangerously shallow. His lips turned blue. We were terrified. Taking him to a hospital in San Diego didn’t seem feasible—they wouldn’t know his condition, and where would we stay?

We prayed and gave him a blessing, which stabilized him, but his breathing remained faint. The flight home was agonizing. I watched every breath, wondering what we would do if he stopped breathing at 35,000 feet.

When we landed, we rushed him straight to Primary Children’s Hospital. The admitting nurse panicked over one of his small seizures, ignoring his real issue—his shallow breathing. But he was admitted, and we finally felt relief.

Finding Support and Fighting for Hope
Doctors initially diagnosed Matthew as cortically deaf and blind. That was hard to accept—I knew he could see and hear, even if he struggled to process it. He couldn’t speak, except for one precious word: Lion, his favorite toy. And once, I swear, as I held him close, he looked at me and said, I love you, Dad.

Because of his rare diagnosis, we were invited to a new deaf-blind program at Utah State University. At first, I felt out of place, sitting among parents of other disabled children. But over time, we became a close-knit group, sharing struggles and hope.

Despite the support, I was frustrated. As a biophysicist, I knew about brain plasticity—the brain’s ability to heal. Yet, the therapies Matthew received seemed routine, lacking real innovation. I saw the vast medical advancements happening in the world, yet children like Matthew were largely ignored. Society had given up on them. But I hadn’t.

Finding Inclusion in Our Church
I became disappointed in my church. I love my church—it has many wonderful programs that have benefited my other children. But I quickly realized there was nothing for a severely disabled child like Matthew. My thought was, Matthew is just as important as my other children—why aren’t there programs for him?

I reached out to my Bishop, then the Priesthood leader over my area, but received no response. Finally, after a year, I wrote the Priesthood leader of our entire church.

To my surprise, I soon received a kind letter inviting my family to meet with him. Grateful for the opportunity, we accepted. In his office, I asked why the church didn’t have the same quality programs for Matthew as they did for my other children. He listened with empathy and explained that much depended on local members, and everyone was working to do better. At that time, children with disabilities were just beginning to be included in mainstream society, and my congregation had never faced a request like mine.

Before we left, this church leader gave Matthew a blessing, asking that he would always have someone outside our family to help him participate in society. That blessing would prove to be life-changing.

A Blessing Fulfilled
The very next Sunday, that blessing came true. Our Bishop told us he had asked two women to help Matthew participate in nursery class—they both accepted. That same week, another woman moved into our congregation who had experience working with children like Matthew and was eager to help. Not just one, but three people outside our family immediately stepped forward to support him.

Over the years, Matthew attended clinics and deaf-blind meetings, but the most meaningful inclusion happened at church, where he was integrated with other children. Our congregation was learning as they went, figuring out how to make participation meaningful for Matthew and his classmates.

It wasn’t enough for him to simply sit in class—he needed to actively engage. This required insight and planning. Often, the class would move on while Matthew was still completing a task, or the other children would lose interest while waiting for him.

Matthew taught me an important lesson: a child can be present, yet forgotten—especially a child with special needs.

An Unforgettable Moment
One year, our church put on a program where all the children had speaking parts. For months, they practiced in class. I assumed Matthew, with the help of his teachers, was preparing as well.

The day of the program, we sat with Matthew in the audience, waiting for someone to help him go on stage. But the program started without him. As each child went up to perform, my frustration grew—he had been included in class but completely left out of the final presentation.

Afterward, I approached the church leaders, expressing my disappointment. Most just listened, unsure of how to respond. But one leader truly acknowledged the mistake and expressed genuine regret. That moment changed me. I vowed to never be someone who goes through life unaware of those who need special help and consideration.

Overcoming the Wheelchair Stigma
As Matthew grew, carrying him became increasingly difficult, especially during outings. Several caregivers suggested we get a wheelchair. It was practical, but the thought of taking him out in public in a visibly “disabled” device was overwhelming. We compromised with a large stroller that had a removable bucket seat and foldable frame. It worked for years, but eventually, Matthew outgrew it. The next size up was bulky and looked even more like a medical device, making me hesitate. Then, one day, a family knocked on our door. Their son had passed away, and they wanted to donate his wheelchair. It wasn’t like anything I had seen before—a modular frame with adjustable bars, looking more like a hospital apparatus than a traditional wheelchair. Since I had worked in hospitals, the clinical look felt more acceptable to me. We placed Matthew in it, and he fit perfectly. It even had rotating shoulder supports that helped him sit upright. It was exactly what he needed—a true gift from God.

Advocating for the Deaf-Blind Community
For over five years, we attended deaf-blind meetings, working with state and local agencies, universities, health departments, and legislators to build a statewide program. These efforts required:

• Coordinating between the State School Board, the School for the Deaf and Blind, and university programs
• Defining the roles of each agency
• Convincing the Utah State Legislature to fund the program

I remember sitting in a legislative education committee meeting, preparing to ask for over $1 million to establish a Deaf-Blind program. With only a handful of children who would benefit, I feared we wouldn’t stand a chance. Experts gave presentations, a parent spoke, and then it was our turn. We wheeled Matthew to the front and shared our story. I don’t remember exactly what I said, but I do remember feeling intimidated. To my amazement, the committee overwhelmingly voted in favor of bringing the proposal before the full legislature.

Embracing Life with Matthew
Despite the 24/7 care Matthew required, we never let his condition stop us from making memories as a family. We brought him along on vacations, hikes, and road trips. His wheelchair seat doubled as a car seat in our van. This picture was taken on one of our many family adventures—hiking through the sandstone cliffs of Arches National Park, carrying Matthew every step of the way.

We had so much fun with Matthew at home. His brothers and sisters were always holding him and playing with him. One winter, after a heavy snowfall, our older children built a huge snow hill from the snow shoveled off our driveway and sidewalks. In this photo, Matthew is in his sister’s arms, laughing as they slide down together.