Despite being born with spina bifida, a resilient Mya Muckey enjoys life

by: RAY PITZ - Angi Muckey with her daughters Ema, 11, and Mya, 4, share happy times in their Sherwood home when Mya, who has spina bifida, isn't hospitalized with ongoing surgeries and medical treatments.Mya Muckey is a tiny, adorable 4-year-old whirlwind who loves Barbie dolls and Disney princesses.

In fact, she is quick to offer visitors to her Sherwood home a look at a photo album filled with pictures of her, 11-year-old sister Ema and mom Angi on their trip to Disneyland in December 2012 where they had photos taken with several of the princesses.

But Mya's happy exterior masks a devastating condition: She was born with spina bifida, a developmental congenitive disorder caused when the embryonic neural tube doesn't close completely on the 20th day after conception.

When her mom asks Mya to lift her top, the ends of implanted tubes to receive nutrition and medications are clearly visible.

Mya has the most severe form – spina bifida cystica with myelomeningocele – and has had 14 surgeries plus countless doctor appointments and 60 hospitalizations in her short life

October is Spina Bifida Awareness Month, but it is often overlooked because October is also Breast Cancer Awareness Month, and Angi, a special education teacher at Sherwood Middle School, is on a mission to bring more attention to spina bifida and its causes, which will take many research dollars.

Raising awareness is a family affair: Mya's cousin Aidan Marcum is the quarterback on Franklin High School's football team, and he rallied the team, coaches and fans at the school's homecoming game in October to bring awareness about the condition to everyone in the stadium.

Ema, who is a sixth-grader at Sherwood Middle School, sold yellow “Spina Bifida Awareness” bracelets in the stands, with Angi noting that pink is the color for fighting breast cancer, and she wants people to think of spina bifia when they see yellow. The football team wore yellow socks, and some players wore the bracelets during the game.

While Mya had a great time at the game and can be the life of the party, it often catches up with her and she runs out of energy

“Right now we're battling fatigue,” Angi said in early November. “She attends Little Tigers Preschool at Tigard High School for two hours a day three days a week and the rest of the day is in daycare in Sherwood.”

Angi learned about the spina bifida through amniocentesis when she was 19 weeks pregnant with Mya, who was a fertility baby. Mya's condition was discovered later in the pregnancy than usual because ultrasounds didn't detect it due to her spine having a thin layer of skin covering it so it was not totally exposed.

Angi, who was married to Mya's dad at the time, said she did everything right during her pregnancy, but when Mya was born, “we were not prepared for how she came out,” she said.

Angi added, “She had a big cyst like a tail and went right to the neonatal intensive care unit. She had her first surgery at 1 month old and has had five spinal surgeries and another scheduled for Dec. 23 to keep releasing the spinal cord that is tethered to tissue. There is no cure. Every surgery is to relieve symptoms.

by: SUBMITTED PHOTO - Maya Muckey, 4, has a zest for life in spite of dealing with a chronic disease.“Mya has never had bladder function and has had to be catheterized since, and she lost her bowel function at 1 month,” Angi said. “She has a G-tube for feedings, a cecostomy for her bowel and a vesicostomy for her bladder. She has a whole team of doctors at Legacy Emanuel Medical Center.”

Out of all the families that the Muckeys have come to know through the Spina Bifida Association, “Mya is mobile but one of the most unhealthy,” Angi said. “She also has sensory issues.”

In addition to medical appointments, “the spontaneous ones are the most difficult,” Angi said. “Every two months, Mya is at the hospital for routine tests, but she recently had a 103-degree temperature, so we went right to the emergency room.

“Now she has been diagnosed with epilepsy. Her first big seizure was in March this year. I've worked around sick kids, but as a mom, when it's your own kids, you want to make it better. Mya is on pain meds, two different anti-seizure meds, bladder meds – a whole cocktail of drugs. Our kitchen looks like a pharmacy. She has a lot of pain, which affects her quality of life.

“Mya is part of everything I do with her – and she knows her morning and evening meds and how to do everything, and can tell you how to do it. I want Mya to be as independent as possible.”

In fact, Mya has the routine down so well that when she plays “doctor” with Ema or her cousin, she will say something clinical such as “I'm going to pin you down while I insert an IV.”

Even the Make-A-Wish trip to Disneyland a year ago was marred by medical issues that cropped up: Mya had to have emergency surgery right before the trip and was in the hospital when she was supposed to be at the going-away party that the Make-A-Wish Foundation always hosts for families going on trips; while at Disneyland, Mya started swelling up, broke out in a raised rash, and experienced shallow breathing so had to go to a local hospital.

by: SUBMITTED PHOTO - Aidan Marcum, a Franklin High School quaterback who is Mya's cousin and the person who arranged for his team to wear yellow socks in honor of her, talks to his young cousin during the October game.But the trio, accompanied by Angi’s mother, who is a nurse, found time for fun experiences too. According to Mya, Minnie Mouse and Daisy Duck are her favorite characters, but she also loves Rapunzel and Ariel too.

Another fun adventure that the family looks forward to annually is attending Camp Attitude every summer. The camp is located outside Sweet Home and is a not-for-profit Christian organization dedicated to providing a unique Christian camping experience for families in the disability community. It started in 2000 with a mission to promote active participation in a safe and inclusive outdoor environment, according to its website.

“Every year Sherwood Middle School has a fundraiser, and last year the students decided to raise money for Camp Attitude instead,” Angi said. “They raised more than $2,000, and the top kids who raised the most money volunteered at the camp for a day helping to build a playground.”

During the summer of 2013, the camp served 252 disabled campers and 906 individual family members, according to a recent newsletter.

“The kids get to do things they normally wouldn't get to do,” Angi said. “Normally, medical appointments rule our world. Anytime I have a day off from school, I schedule doctor appointments.”

She added, “The Sherwood School District has been beyond amazing. It is more than 100 percent supportive of my situation. I am very, very fortunate. Sometimes I have to take one or two weeks off at a time.”

But for the most part, Angi takes life one day at a time.

“There were times when I thought we were losing Mya,” she said. “We've had some pretty scary moments, but she's a fighter. We try to live a normal life. I want Ema to have a normal life. We go to every one of Ema's sporting events – basketball and softball – on the weekends. But I'll be in debt forever with medical bills.”

Angi's mission is to bring awareness about spina bifida to more people, which is why she is sharing her family's story. And her best ambassador is Mya. “I want as much as I can to empower her to educate people,” Angi said. “The Franklin High School football team did so much to bring awareness to everyone there that night. They are a pretty amazing group of boys.”

And what about Mya's long-term prognosis?

Angi tears up and responds, “I don't know.”

Spina bifida at a glance

Spina bifida is the most-common, permanently disabling birth defect in the United States, according to the Spina Bifida Association.

Spina bifida literally means “split spine.” Spina bifida occurs when a baby is in the womb and the spinal column does not close all of the way. Every day, about eight babies born in the U.S. have spina bifida. No one knows for sure what causes spina bifida, but scientists believe that genetic and environmental factors act together to cause the condition or a similar birth defect of the brain and spine.

With help, children with spina bifida can lead full lives. Most do well in school, and many play in sports. Because of today’s medicine, about 90 percent of babies born with spina bifida now live to be adults, and about 80 percent have normal intelligence.

As the type and level of severity differ among people with spina bifida, each person with the condition faces different challenges and may require different treatments.

The best way to manage spina bifida is with a team approach. Members of the team may include neurosurgeons, urologists, orthopedists, physical and occupational therapists, orthotists, psychologists and medical social workers.

The Spina Bifida Association's National Resource Center on Spina Bifida provides high-quality, confidential information and referral services. Every year the NRC responds to as many as 10,000 questions about health care, education, employment, benefits and more. The NRC is the only clearinghouse of information exclusively dedicated to spina bifida and can help find the closest SBA chapter or clinic, locate support resources in your area and more.

Whether you are an adult living with spina bifida, the parent of a child with spina bifida or just found out that the baby you are carrying has spina bifida, the NRC can help.

To access the NRC, send an email to This email address is being protected from spambots. You need JavaScript enabled to view it., or call 800-621-3141, Ext. 35.

Tax-deductible donations help ensure that the National Resource Center can continue to provide education, advocacy and care to the spina bifida community.

For more information on ways to give, please contact the development office at This email address is being protected from spambots. You need JavaScript enabled to view it. or call 800-621-3141, Ext.11.

People also may donate by check (made payable to SBA) mailed to SBA, 4590 MacArthur Blvd. NW, Suite 250, Washington, D.C. 20007.

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