PANHANDLE, Texas - Six-year-old John Detten and four-year-old Emma Detten both suffer from an extremely rare condition called Wolf-Hirschhorn Syndrome.
It only affects about one in 50,000 live births according to the NIH.
Wolf-Hirschhorn Syndrome is caused by a deletion of the short arm on the fourth chromosome, their mother Stacy Detten said.
"That causes heart defects, seizures, kidney disease, physical and mental delays and disabilities," Stacy said.
Both children have heart conditions and vision problems as a result and have already undergone extensive open-heart and eye surgeries in Dallas, as they require special anesthesia.
Stacy and her husband, Vincent Detten, said their days begin relatively early, feeding John and Emma and administering medicine to help prevent seizures.
The Dettens are a Children's Miracle Network family, meaning CMN helps connect them to specialists, life-saving equipment, and even brings in doctors to the Amarillo area to help meet their needs, as well as covering a portion of medical expenses.
"It gives you a peace of mind knowing that I can say, 'Yes' when a therapist says they need something special and not say, 'Let me see what we can afford,' Stacy said.
Before they began receiving help from CMN, she said they were paying upward of $20,000 to $30,000 a year in medical expenses alone.
"Anything that they've needed," Stacy said, "either Children's Miracle Network has been able to provide it, or found somebody that can provide it...They are easy, easy to work with."
Now that they are able to travel less, and the children have been able to stay healthy and out of the hospital, the Dettens see a lot more of each other.
"Children's Miracle Network has helped us to be together more," Vincent said. "They have helped us to be in closer proximity to each other."
You can also text CMN to 51555.
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