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.
So on Feb. 4, Fletcher went home.
“He has thrived at The Children's Center, I mean he has thrived,” Denise Burns said.
Fletcher received speech, occupational, physical and music therapies at the center as well as going to school for one hour a day from the time he was 3 years old. He continues to visit the center twice a week for therapy.
“He's a special kid,” said Travis Doussette, communications director for The Children's Center. “There are a lot of people here that love him.”
Fletcher mainly uses sign language, but can communicate with people who are around him a lot and can understand what he is saying.
“He knows all of his sight words, he can spell, he can count, knows all of his colors, he knows them in sign language, to say them out loud and to see the word, he's got it going on,” his mother said.
Fletcher does not walk, but does scoot around the house and can sit up on his own.
“He doesn't have fear,” Denise Burns said. “When he runs out of cord, we just push the ventilator to where he wants it.”
Fletcher has two sisters, Kayleigh, 19, and Maddie, 11. Maddie also attends Bethany Elementary.
“I can't believe that I get to take them to the same school, I didn't think that would ever happen,” Denise Burns said.
The Burns were nervous about bringing Fletcher home, but say the past two months have been a blast.
“Us all sitting at the dinner table for the first time was amazing,” Burns said. “That was huge to our family, eating dinner together. The ordinary things are the things we didn't ever get to do because we had extraordinary circumstances.”
Denise Burns looks forward to more family moments, such as attending graduations and weddings.
“I don't really see anything negative; I just think it's going to get better each day.”