By: Kristen Cusato
Fairfield, Conn. (WTNH) – Kelly and Jason Takacs had their first baby in 2005 – a little boy they named Ethan. But soon after he was born Ethan was diagnosed with type one Spinal Muscular Atrophy , a rare genetic disorder that doesn’t let muscles move and causes breathing and swallowing problems.
Most babies born with SMA don’t live past the age of two.
“Basically the doctor was telling me ways to remember him before he was already gone,” Jason said. “He was putting a time limit on him of 18 months, giving us very little hope.”
But Kelly and Jason would not give up. They fought hard to keep Ethan strong, got him new medical equipment, and gave him hope. And now, five years later, Ethan is in kindergarten at North Stratfield Elementary School in Fairfield.
Several hours a week Ethan is in class learning. He cannot move anything but a few fingers, and he can only make small noises, but his home teacher Stacey Bannon and his nurse Bernadette are with him helping him participate.
“Ethan’s really smart,” Bannon said. “He knows a lot of things, he just can’t communicate it the way we normally communicate, so, it’s a really big boost for him.”
“When I am planning my lesson plans I really work hard with his service teachers to make sure he can see what we are doing together in class,” Kindergarten teacher Darcy Shoop said.
Kelly, who has to worry about everything from germs to Ethan’s ventilator, has no fear when her son is here. “I know he is going into a place he is so happy,” she said, “at the same time everybody has got their eye on the situation.”
School officials, nurses, the family, even the other kids, all work together so Ethan can be a five-year-old going to school for the first time.
“I hope they understand that while they were in kindergarten they’re giving my son such a gift — each of one these children — by being his friend.”
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