BETHANY — Fletcher Burns is finally at home with his family after a seven-year stay at The Children's Center in Bethany.
The 8-year-old had been under the hospital's care since shortly after having heart surgery when he was 10 months old. He became ventilator dependent after the surgery, and insurance would not cover the costs of having him on the respirator at home, so he went to stay at the children's center on Jan. 9, 2006.
Now that he is home, he is in the first grade at Bethany Elementary.
“He's in a regular class with regular kids,” said his mother, Denise Burns. “He's not pulled out for special education. It's really wonderful.
“Little kids love him and all want to help him, that's been a major blessing, too.”
His mother said she was worried about how the other children would react to him, but his classmates have stunned her with their kindness.
“Their biggest concern about Fletcher is why he's so small,” she said.
Fletcher has epidermal nevus syndrome, a rare skin disease, and hypophosphatemic rickets, which stunted his growth. After he was born, he was in intensive care for 19 days and the heart condition was discovered.
“We went to a routine cardiology appointment on Oct. 27, 2005, and never went back home,” Denise Burns said.
Fletcher had surgery 17 days later. He also had problems with his lungs, but as far as the doctors can determine, the heart and lung issues are not part of his skin syndrome.
Last summer, Fletcher's nurse practitioner worked with the family to find a way to take him home.
Their insurance policy had only $1,000 allotted for durable medical equipment, which would not pay for all of his equipment.
The Children's Center appealed for them to get private duty nursing and after winning it, the Burns found out there was no limit to the equipment covered by their insurance.
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