A Cure For Mason: Boy Copes With Rare Genetic Disorder
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HUTCHINSON, Minn. (WCCO) – For nine years, a Hutchinson mother has coped with the fact there’s no cure for her son’s rare genetic disorder. Until now.
“If you’re happy and you know it, clap your hands. If you’re happy and you know it, clap your hands,” sings mother Sara Schwarzrock to her son, Mason.
If he could, he would be clapping his hands all the time. He is always happy. “Belly laugh” is how his family terms Mason’s infectious chuckle.
“You’ll walk in the door and he starts, laughing and jumping, and he’s so excited to see you, and it’s amazing,” Schwarzrock said. “He can’t get enough of love. You know, hugging and kissing and smiling, he has the most beautiful smile.”
Mason — who has a twin sister, Madison — was diagnosed at 16 months with a condition called Angelman’s Syndrome. It’s a genetic disorder that affects one in every 1,500 children.
The syndrome has also affected nearly every aspect of Mason’s life, requiring someone to constantly supervise him.
Seizures are one of the many symptoms. Mason also can’t sleep through the night.
“From 4 to about 5:30, we’ll hear him laughing hysterically up in his room for I have no idea why. Kicking the walls and kicking the bed,” Schwarzrock said.
Schwarzrock, who is called “Super Mom” by acquaintances, says she gets through it all by looking forward, milestone by milestone.
“He’s really good at colors. He knows five,” Schwarzrock said.
The thought of a cure, though, for Mason to behave more like his other four brothers and sisters was something she was told wasn’t possible.
Schwarzrock was on the computer when she stumbled upon an article that gave her a hope she’d lost nine years ago.
“They cured it in mice. In six weeks, at that,” Schwarzrock said.
The family applied for one of 24 spots given to children around the world to participate in clinical trials. Months later, they found out their Mason was accepted.
“It was like winning the lottery, a million times better than winning the lottery,” Schwarzrock said.
The family is supposed to go to Florida three times in 16 weeks. They’ve gone once to receive Mason’s first dose of treatment: Minocycline, an antibiotic that you’ve likely heard of as it’s most often used to treat acne.
Schwarzrock says she doesn’t expect a miracle, what she does hope for is to hear her son speak for the first time.
“It’s the hardest thing I think about it. Because when he’s sick, you don’t know how to help him, what hurts,” Schwarzrock said. “It’s like he has so much he wants to tell you, but he just he can’t make it past that barrier. If anything were to come out of it, I just want to hear him say ‘Mom’ and ‘Dad.’”
Whether it’s a cure to Angelman’s Syndrome remains to be seen, but even if it isn’t the final answer, Schwarzrock says she’s grateful her little boy has a rare quality that’s been more of her blessing than curse.
“He sees the beauty in everybody, you know. He really does,” Schwarzrock said.
At this point, the Schwarzrocks are choosing not to reveal the results of Mason’s progress, in order not to taint the trial for other children. We won’t know how well the drug works at reversing several of the symptoms of Angelman’s Syndrome until the study is completed next year.
This Saturday, June 23, there will be a benefit for Mason in order to raise money to get the family to Florida for his treatments. The benefit starts at 3pm at the Eagles Club #4441 located at the Victorian Inn in Hutchinson (1000 Minnesota 7, Hutchinson, Minn.). There will be a silent auction and door prizes.
You can also mail donations to MidCountry Bank at 201 Main St South, Hutchingson, MN, 55350.