Yuma girl doesn't let rare condition stop her
YUMA, Ariz. -— Two-year-old Ella Kaye Wagner lives with a condition called arthrogryposis multiplex congenita, which causes the joints in her arms and legs to be locked into position. But she doesn't let that stop her.
She's a budding musician, just like her daddy. She loves to bang out tunes on her play piano and demonstrate her talent with the toy guitar.
When meeting someone for the first time, Wagner tells the Yuma Sun she pretends to be shy. But she soon breaks free of her shell and flashes disarmingly sweet smiles.
"She's a big ball of energy," said 24-year-old Dave Wagner of his daughter.
Ella Kaye constantly follows her dad around the house, helping him clean. She can't walk, but she's a great scooter. The toddler doesn't seem to believe there's anything she can't do.
"She's very independent. She wants to do things on her own, but she can't do everything. She gets frustrated when she wants to do something but needs help," said her 22- year-old mom, Audrianna McMillen.
The little girl is also very smart, with a surprising vocabulary. She talks in sentences, can count to 10, knows her colors and can say the alphabet with her parents. She also loves to "read" books.
"She's the greatest gift from God. She is truly amazing," McMillen said.
The proud mom tells her friends that Ella Kaye is not disabled. "She is different-abled. Disabled implies she can't do some things. She can do everything, but differently."
There was a time when Wagner and McMillen didn't know whether their baby girl would survive. Testing during McMillen's pregnancy revealed that the baby's intestines were growing outside her body and that she had club feet, hand malformations and a possibly enlarged heart.
Wagner and McMillen were told the baby might not survive the pregnancy. At 24 weeks, she was told to consider an abortion.
"I said no. I felt it would be murder, especially so far along," McMillen recalled.
Doctors monitored the baby's development with weekly ultrasounds and heart monitoring. They later learned the baby's heart was fine.
At 36 weeks, McMillen delivered Ella Kaye via a caesarean on Dec. 20, 2009, in Phoenix. Seeing her newly born baby with her intestines outside her body "was a complete shock."
At her birth, doctors didn't have a name for Ella Kaye's condition. "It is so rare we had never heard of it before she was born. Even the physical therapists, doctors and nurses had never heard of it," McMillen said.
Ella Kaye underwent her first surgery at 4 days old to repair her intestines and spent a month in the hospital. After further testing, they learned the baby girl had arthrogryposis multiplex congenita. A specialist immediately recognized some of the signs, such as the "angel kisses" — red markings on her face that are now faded but come out when upset — and fixed joints and tendons in her arms, hands and legs.
"Her muscles and joints did not develop. No one knows why, it's not genetic. There's speculation it could be due to maternal superheating during pregnancy. We're both from Minnesota and we moved to Yuma (to be closer to family) when the weather was 115 degrees," McMillen said.
"With superheating, the uterus doesn't grow like it's supposed to, so her joints didn't develop as she had no room to develop. And connective tissue grows on them."
In her 2-1/2 years, Ella Kaye has had five surgeries and countless therapy sessions, which released one elbow and now she can bend her arm. She's recently discovered that she can bring her hand to her mouth, something that most babies discover early on.
The little girl used casts for a while, but now she has very fashionable pink-and-animal-print braces that keep her feet in the flex position, stretching them out.
Since each case is unique, only time will tell how much she'll be able to do. However, McMillen, a caregiver for the elderly and a full-time health care administration student, and Wagner, a construction worker and musician but currently staying at home until Ella Kaye starts school, are hoping to give her all possible opportunities.
"I just want for her to be happy and that she doesn't have sadness with her condition when she's older," Wagner said. "I don't know what I will say when she asks, Why am I different?"
McMillen points out that with her personality, Ella Kaye won't let anything hold her back. But she is afraid children will make fun of her daughter when she starts regular school. In the meantime, her daughter will start a preschool with other special needs kids in January.
In the immediate future, the young family has to deal with other challenges involving Ella Kaye's care, such as reliable transportation to the Shriners Hospital for Children in Los Angeles.
The last time they took Ella Kaye for a treatment, their car broke down on the highway and the normally six-hour trip took 12. They're trying to save enough money to replace or fix the car, but like a lot of families, they live check to check.
Since family and friends have expressed an interest in donating to their cause, Wagner's sister set up a PayPal account at www.ellasworld.me, which follows Ella Kaye's journey. Family members also opened up an account for donations at Wells Fargo.
The good news is that when Ella Kaye was 1-1/2 years old, the local Shriners took an interest in helping her. They have paid for surgeries, splints and visits to the Shriners Hospital in L.A.
The tot still has more surgeries waiting for her. Her parents want to do as much as they can when she's young. However, they are reserving some surgeries for when she's older so she can decide how much she wants corrected.
For example, her dislocated hip can be fixed with surgery but it might cause other problems. The same with her wrists. Surgeons could take some bone out to straighten them, but will she want that?
"We don't want to make that decision for her," McMillen said.
In the meantime, her parents do daily therapy with their daughter, helping her straighten and bend her arm so it won't become fixed again.
"It's been a long journey with her, but it's been an amazing one. We still have a long way to go, though," McMillen said.
Copyright 2012 The Associated Press.