Kim Netz, with sons Matthew, center, and Michael visited Mount Vernon, the home of George Washington, in 2009. Matthew wanted to see the sights in Washington, D.C. Kim Netz said.
Kim Netz is brave.
The Sallisaw mother of four lost her son Matthew to Duchenne muscular dystrophy on April 6, 2014.
But it’s not her story she wants to tell. Kim summoned her bravery to tell Matthew’s story, the story of a young man who fought muscular dystrophy, and lost. Matthew’s story isn’t the story of loss. It’s a story of victory, the victory of the human spirit.
“Matthew,” Kim said, “is the strongest, bravest man I’ve ever known.”
This is Matthew’s story.
Netz said she knew she was a carrier of Duchenne muscular dystrophy, or DMD, after her sister was also diagnosed as a carrier. But she was in denial, she confessed. She said she was under the impression that, if she was a carrier of the disease, then all her children would have it. Her first two children, a boy and a girl, were healthy. So when Matthew was born on June 18, 1990, he appeared healthy and she had no fears. It was only later she learned that children of a carrier of the DMD mutant gene, have a 50-50 chance of having DMD.
When Matthew was born, motherhood luck fell on the wrong side of that 50-50 chance.
According to the MDA web site, DMD is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. Symptom onset is in early childhood, usually between ages 3 and 5. The disease primarily affects boys, but in rare cases it can affect girls.
Kim explained that the mother is the carrier of the DMD chromosome. She and her two sisters are carriers, which means her mother was also. She said there is no explanation for this phenomenon. Her immediate preceding family had no other cases of muscular dystrophy. But her sister’s son, Robert, died of DMD shortly after Matthew’s death.
It wasn’t until Matthew was age 7, and his aunt noticed he was falling down a lot, that it was suggested Matthew had DMD. A blood test confirmed the devastating diagnosis. When Matthew was diagnosed, Kim said the family did whatever the doctors recommended. When asked how she was able to cope with the diagnosis, Kim said, “He’s your child. You love them, and you do what you have to do.”
Matthew was able to walk until he was age 10, then he had to use a wheelchair.
As a child, he adapted to the disease, Kim said, but when Matthew became a preteen, he began to ask questions.
“One day when I came home from work he was just sitting there, waiting on me,” Kim recalled. Matthew appeared so sad, Kim said, “I asked him what was wrong.
“He said, ‘I don’t want to die when I’m 18.’”
Kim said she demanded, “Who told you that?”
Matthew said he had looked it up on the internet.
“My heart just broke,” Kim said. “I told him they are making progress every day.”
From that day forward, Matthew knew his future might be shorter than others of his own age. But he didn’t let that slow him down.
“He accepted it,” his mother said.
And he did what all children and teens do, or as much as the disease allowed. He attended camp, with the assistance of the Muscular Dystrophy Association (MDA).
“He would yell and scream when we took him to camp, but when I went to pick him up, I couldn’t find him.”
The camp is free for muscular dystrophy patients, and allows the children to feel normal, if only for a week.
“Every child wants to be normal,” Kim commented wistfully.
Matthew attended prom.
Kim recalled, “He got coffee drunk at prom. He drank so many mud slides from Aroma’s he just talked and talked and talked. When he got home and we were trying to get him undressed out of his tux, he just kept talking.
“And then he just passed out,” she related, grinning at the memory.
Matthew wanted to be a writer.
“He wrote a poem, it was published and he won an award,” Kim said.
Matthew graduated from Sallisaw High School, Kim said. Principal Ernie Martens told her that Matthew “will always be remembered at Sallisaw High School.”
In 2009 the family took a vacation together, to Washington, D.C., which was Matthew’s choice. They visited the sights there, including Mount Vernon, George Washington’s home. Kim and her sons, Michael and Matthew, were photographed with the mansion in the background.
He and his brothers were close, Kim said.
Jason, the oldest is now 34.
“He was the protector,” Kim said.
The youngest is Michael now 24. Michael went off to college at Oklahoma Baptist University in Shawnee with the intention of becoming a neurologist, to find a cure for muscular dystrophy. But he took another path. When he explained to Matthew that he felt the calling to become a minister, Matthew said that was okay, Kim recalled.
Later, “Michael led Matthew to the Lord,” Kim said.
When Michael came home from college one year, he and Matthew spent the entire night talking, questioning, crying and praying. That was a turning point for Matthew, Kim said.
“He was a different person after his brother led him to the Lord. His heart, it was made of gold after that. He changed. He was a blessing. I was blessed. I was so blessed,” Kim said. Her tears baptize that emotion.
But as muscular dystrophy destroys the muscles, life ebbs. And Matthew’s life began to wane. He was in and out of the hospital for long periods before his death, and on his last admission was diagnosed with pneumonia in both lungs.
Here, Kim’s voice begins to falter. Tears fill her eyes. She must be silent for periods of time as she fights to gain control so she can tell her son’s story.
She recalls how doctors and nurses fought to keep him alive, had to perform a tracheotomy and CPR, and give him new experimental medicines. She couldn’t even watch the monitors, Kim recalls, as they gently ticked away the moments of Matthew’s life.
She recalls demanding of one doctor, “You save my son’s life! Save my son!” And then how the doctor had to save her from falling to the floor.
It was a mother’s nightmare.
The entire family gathered around Matthew in that Tulsa hospital, and on the day he left, Kim recalls she didn’t even want to go to the hospital. She had slept by his side the entire night before, holding his hand.
“They were just keeping him comfortable,” Kim said. “Of course we knew it. I whispered in his ear. I told him ‘Matt, it’s okay. I know your body’s tired.’”
It was Matthew’s brother who saw the monitors slow and saw that Matthew was slipping away.
“Of course I just gathered him in my arms. He passed away in my arms,” Kim said. “He was gone.”
Over two years later, Kim says she thinks of her son every day.
“I loved him so much,” she said between tears. “I miss him every single day. I miss our Saturday morning coffee. He was one of a kind, so strong, so brave.
“He went through more than anyone should have to.
“I was angry at God a long time,” Kim said about her son’s disease. “But there's a reason we don’t understand.”
Kim concluded, “Matthew, he had a way of touching people’s hearts I’ve never seen before. He even touched the doctors and the nurses. I always feel him around me.”
Kim Netz, the mother, said she wanted to tell Matthew’s story even though it was painful.
She concluded, “If it can help somebody, then I’m fine.”
Matthew’s story is a tale of bravery, by both mother and son.
And Kim, the mother, counseled everyone, “Just live each day. Make the most of each and every day.”
Sally Maxwell, Senior News Director
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