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Updated Jun 30, 2012 - 11:03 am

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.

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