7-year-old Bailey has Charcot-Marie-Tooth Disease, find out what it is and how you can help

When Bailey Roestenburg was three years old, her mom, Vanessa, noticed she would fall a few times a day.

Of course, most toddlers stumble a little, but since Bailey's father and step-brother have an incurable disease that causes balance issues, Vanessa paid attention.

Months later, Bailey's falls increased to 10 to 15 a day.

That's when Vanessa knew her daughter had inherited Charcot-Marie-Tooth Disease, a nerve disorder that causes neuropathy, balance problems, weakness and fatigue, among other things.

"She could be talking and she would fall. Or standing there and start to fall," Vanessa recalled.

So Vanessa took her daughter to get tested. It's a day she remembers well.

"The testing is emotional in itself. They have to sedate them, so they're awake, but they seem like they're drunk," Vanessa recalled. "They take this thing that looks almost like a taser and put on the legs, feet, arms and hands and zap them...They put those sticky things on like when you get an EKG, and this machine records how long it takes her nerves and muscles to respond to the zap. That's how they get diagnosed. That was really emotional. Both my mom and I were crying."

Just as she suspected, the diagnosis was positive for CMT.

To help Bailey's balance, she had to be fitted for braces for her feet and legs. Vanessa was glad she was able to get that all taken care of a few months before Bailey started kindergarten so she could get used to them.

It was hard for Bailey to adjust at first, especially with people looking at her.

"When she was younger and we'd be at the store, she would start hiding and I'd know someone was looking at her," Vanessa said.

When she doesn't have her braces on, Bailey's feet twist inward. She calls them her "twisty ankles."

"I don't like it because I just want to be like other people, doing other things," Bailey, 7, says.

And, she's pretty sad she can't wear a lot of the cute shoes, since she has to get larger ones to accommodate the brace. High heels will never be an option for Bailey.

But, there are plenty things she does enjoy. Bailey is an artist who loves to draw and paint. She enjoys running around, even though she can't do it for long periods of time. Overall, she's a pretty normal girl who doesn't let her disease get in her way.

"My sister is more the expert on how Bailey handles her disease in every day life, but I do know that Bailey never gives up," said Kristen Oaxaca, Vanessa's sister. "She has had what she calls her "twisty ankles" since she was 3... she may not be as strong or as fast as everyone else, but she has more heart than all of us put together. She loves to dance and to draw — both things that are affected by CMT (since it affects the nerves in her extremities), but she always does her best. Bailey's personality shines no matter where she is or who she's with. If you see a girl with cute dimples, sass for miles and who's making a fashion statement with leg braces and a dress, that's Bailey."

Living with CMT

Her mother has found ways to modify simple tasks at home so Bailey can do things for herself.

For example, squeezing shampoo and conditioner bottles are difficult for Bailey, since she doesn't have much strength in her hands. So, Vanessa figured out it was easier to use cake decorating bags for the toiletries. She fashioned a pulley so Bailey could open and close the bathtub drain. Pushing a soap bottle to wash her hands is difficult, so Vanessa got an automatic soap dispenser.

It's all about modification, Vanessa says.

The disease depletes Bailey's energy.

"It takes people with CMT twice as much energy to do things as we do," Vanessa said. "If we can get her moving and keep her moving, she can last a little longer, but if she's moving and has to stop for a little bit, she just gets tired and sore."

"Sometimes I do soccer and there's a lot of running and sometimes my legs get tired," Bailey said. "So I tell my P.E. teacher I need to sit out and rest a little bit and then keep on going."

At night, Vanessa helps stretch her daughter's feet so they don't tighten up. She takes nightly nerve medicine for the pain in her wrists.

"When she gets tired her hands start to shake," Vanessa said. "I do know her dad and half-brother have a significantly hard time with handwriting. I haven't seen that with her but the act of holding the pencil is very tiring. And they wear out quickly."

She has a laptop at home and is learning how to type so she can save her energy on her hands.

They have to pay special attention to Bailey's feet and look for sores or cuts since Bailey wouldn't feel it if she had one that wasn't super deep.

"We've had talks about you can do it, but it's just gonna look a little different," Vanessa said. "She asked why God made her this way and we told her 'he thinks you're strong enough to handle it and he has a plan...We can't see it yet, but he does."

Bailey runnin — Bailey Roestenburg doesn't let her leg braces get in the way of running and playing.
Courtesy of Vanessa Roestenburg

Bringing awareness to a disease you've never heard of

A big challenge for Vanessa and Bailey is that people don't really know about CMT. They glare at them when parked in a handicap space or they stare at Bailey's braces.

So, with the help of her sister and the CMT Association, they are hosting a 5K walk on March 25 to create awareness and raise funds for research.

"We wanted to do something that would not only raise funds, but would also bring awareness to the disease, as it's often described as "the most common disease nobody's ever heard of," Oaxaca said. "We thought that the walk was a great way to get the community involved even though CMT makes it hard for those affected by it to walk, it's almost a sign of courage and strength to see them participating in the walk as well."

Vanessa said she's heard people say they didn't realize it was so common.

"One in 2,500 people are affected," Vanessa said. "I just hope more people are aware of it."

Telling her daughter that her feet probably wouldn't get better was the hardest conversation she's ever had, Vanessa said.

"I remember the day, she was 5, she started to say 'well when my feet get better' and then she said 'wait will they get better?' Vanessa recalled. "And we had to sit down and that was the hardest conversation. We were both crying. To explain that to a 5-year-old."

She is hoping that after doing the walk for a few years, they can make a dent in raising enough money to start finding a cure for the disease.

About CMT

Charcot-Marie-Tooth Disease affects the hands, arms, feet and legs of one in 2,500 people in the United States.

It is a group of inherited disorders that affect the peripheral nerves, which are outside the brain and spinal cord. There are 90 kinds of CMT — each kind causes a different mutation.

It is not contagious or caused by anything in the environment. It is strictly hereditary.

The disease causes progressive peripheral neuropathy or increasing numbness, which results in muscle atrophy and sensory loss in the arms and legs. It also causes chronic pain and fatigue.

The most common kinds of CMT usually become apparent before the age of 20 years old.

Symptoms may include foot deformity (very high arched feet), foot drop, which is the inability do hold the foot horizontal, slapping gait, caused by foot drop, loss of muscle in lower legs, numbness in feet and difficulty with balance. Similar symptoms may also appear in the arms and hands.

There is no cure for CMT and it usually gets worse with age. Other possible complications include the progressive inability to walk because of weakness and balance problems, progressive inability to use hands and injury to other areas of the body that have decreased sensation.

Click here for more info on CMT.

Source: Charcot-Marie-Tooth Association