local mother takes care of her “little miracle” | News
Every mother will say her child is one in a million. For a local mother, Krystal Bavis, her son, Noah, is one in a billion.
After birth, Noah was diagnosed with mosaic Trisomy 12, a disease with only two known patients in the world.
“There is so little information available about her disorder,” Krystal said. “I want to raise awareness because people don’t know about Noah or his illness. He’s such a special kid.
Krystal gave birth to Noah when she was in high school. He was born 10 weeks early.
Krystal knew that “premature” babies could have health issues and prepared herself mentally for what was to come.
“I thought he must be a normal preemie, but a month after he was born everything changed,” she said. While in the incubator, every time Noah ate, his oxygen level dropped to almost zero. It wasn’t just his lungs that struggled, as he was diagnosed with several different heart defects.
As she got older, Krystal started noticing more things that didn’t fit. Noah started developing squinty eyes, pointy ears with holes in the top and he just wasn’t growing the way he should. Doctors became concerned about a genetic problem and Noah was tested.
When the results came back, they saw that Noah’s twelfth chromosome had duplicated and made up 47% of his DNA. The official name for this is Mosaic Trisomy 12, which is somewhat similar to but different from Trisomy 21, which is commonly referred to as Down syndrome.
Trisomy 12 had only been identified five times, with only one person diagnosed reaching adulthood.
“They told me I could never bring him home from the hospital, but here he is nine years later,” Krystal said.
That doesn’t mean his life has been easy. Noah is the same height as his six-year-old brother, does not speak, and is blind in one eye. Noah just this week was added to the list of transplants for new eyes.
Since birth, Noah has continued to defy the odds. Doctors said he could never walk. Last year, after physical therapy and lots of practice, Noah walked alone for the first time.
Krystal will never forget the first time Noah rushed on her ass for the first time. Krystal said mobility is such an important part of a child having a good quality of life.
“They said he’d probably never be able to do that, but he came rushing at me at 100 mph. I couldn’t stop crying about it,” she said. He is absolutely a fighter. He beat all predictions. Having it has been an emotional roller coaster.
Noah has had more than 15 eye surgeries. He underwent open-heart surgery when he was just five years old. No matter what was thrown at him, he always overcomes.
All that surgery and all that struggle has taken its toll on the family.
“He’s been through more than most adults,” she said.
Noah has to go weekly or bi-weekly to Children’s Hospital Pittsburgh. Every time Krystal hears an ambulance, her body locks up. Krystal also has two other children, and caring for all three has put a strain on the family.
As a single mother of three, it takes everything she has for Krystal to keep their little family together. With such a rare disease, which so few also suffer from, Krystal said there were many times when she felt alone.
“There are awareness ribbons for so many disorders, but not for his,” she said. “There just isn’t as much help as you might think.”
Noah has health insurance to cover his medical expenses, but the true cost of his disorder is much higher.
Noah is in a wheelchair, but his house does not have a ramp or a bathroom on the first floor. Krystal’s vehicle, which she uses to take her to Pittsburgh, is not handicap accessible.
“We are at a standstill. As a single parent, it’s all up to me and I still have two other boys to take care of,” Krystal said.
Recently, Krystal had to take time off work to drive Noah to Pittsburgh. Having had to be away for so long to help Noah, she lost her job.
“Juggling all the things I have to do, it just seems impossible to work full time,” she said.
Despite all the challenges, Krystal said she wouldn’t change anything about her son. Noah is his first born and his best friend.
“God gives special babies to special people,” she said. “I wouldn’t change it for anything in the world. He’s the happiest child in the world.”
Although he wasn’t verbal, she said the two had developed their own little language. She said she always knows when something is wrong, and also when he is happy. A mother always knows.
“He may not eat or talk, but he loves to play and fight with his brothers,” she said.
Krystal wants to change the stigma around children who might be special. She said Noah is an amazing kid and not many people in the area know about him.
“This kind of thing can happen to anyone, something happened randomly,” she said. “A lot of people don’t know about his disorder, but that doesn’t define him. It’s a small miracle.
A GoFundMe campaign has been launched to help Krystal and Noah with expenses related to her disorder. Krystal said with rising gas prices, getting to Pittsburgh every week has become very expensive.
The GoFundMe campaign is available online at gofund.me/e9c0d5d8. The campaign name is Fight for Noah.
Dvorkin can be contacted by email at [email protected]