Baby Emma was born with a genetic disorder so rare it doesn't have a name.
RUSHVILLE, ILL. -- From afar, baby Emma McGovern's bedroom looks like any other 4-month-old's nursery filled with diaper bags, pictures, a crib. Everything looks "normal" until you look a little closer and notice an oxygen tank.
"She has breathing treatments twice a day, every three hours we're up for feeds and meds," Emma's mom Mickayla McGovern said. '"To me I think she's seems like a normal baby, she's got oxygen in her nose, and g-tube in her belly. She's looking around, she cries just like a normal baby."
But Emma isn't normal, she's actually one of a kind. She was born with a portion of her chromosome 10 deleted and a section of her chromosome 20 duplicated, a genetic disorder so rare it doesn't have a name. Emma is presumed to be the only person in the world diagnosed with it.
The deletion in Emma's number 10 chromosome is what causes her medical problems. One of those problems is the tissue in Emma's trachea and larynx which is softer than normal and makes it hard for her to breathe on her own.
"She's on one liter of oxygen all the time and she has meds every three hours, she has a breathing treatment every twelve hours, twice a day," Mickayla said.
"You know everyday is a blessing," Kory McGovern, Emma's dad said. "This is far from a burden to us. You know it's been hard, it's been a struggle but it's not anything we're more than willing to do."
There is a possibility that Emma's tissue could stiffen as she gets older and she won't need the oxygen tank. Her disorder makes that chance slim but her family isn't worried about tomorrow just yet.
"Today is today and we'll just wait and see," Mickayla said. "You know we're thankful for what we have today. We're thankful for her sitting here."
"She's been such a blessing to this family that we couldn't imagine it without her," Kory said.
To keep family and friends up to date on her progress, Emma's mom created a blog which allowed her story to touch more than just her immediate circle.
"She's changing a lot of people's lives," Mickayla said. "She was put here for a purpose, she's just one of a kind and we're so thankful that she's ours."
To see Emma's blog, click here.
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