In less than a month, 16-year-old Kasey Bittues will undergo a procedure that will allow her the ability to experience life in a way she never has before.
Kasey was born with not one, but two birth defects, her mother Wanda said. The first is Noonan syndrome and the second is partial anomalous pulmonary venous return.
According to the National Human Genome Research Institute’s website, Noonan syndrome is a disorder that involves unusual facial characteristics, short stature, heart defects, bleeding problems, developmental delays and malformations of the rib cage.
According to childrenshospital.org, PAPVR is a rare heart defect in which one of a child’s pulmonary veins does not connect normally to the left atrium.
“As a result, the blood flow to Kasey’s heart is abnormal,” Wanda said. “It causes fatigue and it’s not easily detected. Only five percent of the population worldwide has this disorder. Doctors discovered Kasey’s heart abnormality this past February.”
Kasey, who is homeschooled, also has a compromised immune system. She has been under the care of a cardiologist her entire life and has been treated by doctors for Noonan syndrome.
“She has a team of about 20 doctors,” Wanda said. “Noonan affects multiple organs and systems in the body. Each organ problem is treated by her symptoms.”
Every year, Kasey is seen by a geneticist and cardiologist. Because Kasey has Noonan syndrome, Wanda said there is a possibility her daughter could lose her hearing and sight. As a result, her eyes and ears are tested annually, along with her spine, because her muscle structure is not as developed as most children her age.
Kasey was 11-years-old when she was diagnosed with Noonan syndrome. She stands four-feet five inches tall, Wanda said. Those with Noonan syndrome are known for their short stature.
On March 31, Kasey will undergo open-heart surgery at Children’s Hospital in New Orleans.
“I’m anxious to get it over with,” Kasey said. “The waiting is the worst part. I’m ready to do normal things.”
As a result of her condition, Kasey had to quit dancing, running and exercising because she suffered from fatigue and shortness of breath.
For now, she enjoys lounging and watching television and hanging out with her dad on the golf course, but she said she is ready to be able to do things she couldn’t before.
“I’m looking forward to running and exercising again,” Kasey said. “I love running because it allows me the ability to get away from everything, be on my own time and listen to my music.”
Kasey plans to attend college to study nursing or become a general surgeon.
“I’ve spent most of my life in hospitals,” Kasey said. “I’ve seen how nurses help people and I want to do that.”
In an effort to offset medical expenses, the family has created a GoFundMe account and opened an account at First National Bank in Picayune.
Donations can be made online at http://www.gofundme.com/kbwoq0.
Additionally, donations can be made at any First National Bank in Picayune, Wanda said. Donors should write “Kasey’s medical fund” in the memo.
“We believe this operation is going to be successful,” Wanda said. “It’s going to turn her life around. She will be able to participate in activities and pursue her life in a way that she hasn’t ever been able to before.”
Kasey said that her friends, family and faith have proven to be her best support group. She also wants others living with her condition to know that they are never alone.
“Someone is always on your side,” Kasey said. “There will always be people there to help you through it. Lean on your friends and pray to God.”