No cure, but plenty of hope for one Lake Area family

By By Kara Carrier / American Press

A Lake Area family wants to give a special gift to their son for his 15th birthday. Brody Meaux, son of Jimmy and JoAnn Meaux

of LeBleu Settlement, has a rare condition called MECP2 duplication syndrome. The Meaux’s want to raise $15,000 by Feb. 2

to help fund research for the syndrome.

According to flier supplied by JoAnn

Meaux, MECP2 duplication syndrome, a neurological condition, occurs

mostly in boys and

“is characterized by moderate to severe intellectual disability,

weak muscle tone, feeding difficulties, poor or absent speech,

seizures that may not improve with treatment, muscle stiffness, GI

problems, delayed development of motor skills and recurrent

respiratory tract infections.”

Meaux said most people with the syndrome regress over time and usually die of respiratory infections by their early 20s.

To help reach their goal, the Meauxs have planned Brody’s Bunch Runs for Research, a 5K/1K walk set for Saturday, Nov. 16,

at Iowa City Park. “Brody’s Bunch wants 15 for 15 — $15,000 for Brody’s 15th birthday,” said Meaux.

According to Meaux, research is

severely lacking for MECP2 duplication syndrome. Brody didn’t receive an

official diagnosis

until he was 5 years old when a Houston doctor came up with a new

blood test, she said. Meaux said she had three brothers

and a nephew who died, and they now know it was from MECP2

duplication syndrome. “For us to finally figure out what this was,

was absolutely amazing,” she said.

Meaux said MECP2 duplication syndrome is like a cousin to Rett syndrome, which mostly affects girls, and has had a lot of

research done already. “Many of the characteristics of Rett’s are the same as with Brody. So with the conditions being so

close, we can just work off what they have learned with Rett’s,” she said.

According to Meaux, MECP2 kids have more respiratory problems than those with Rett syndrome (all three of Meaux’s brothers

died of pneumonia) and are more susceptible to seizures. “When seizures hit, it just seems like everything plummets,” she

said.

Brody had his first seizure in 2005

during Hurricane Rita. Meaux said that over the years he started having

more and it caused

him to quickly regress. “He was still walking back then, and he

was a whiz on the computer,” she said. “He was doing really

good with those things, but when those seizures hit, it was like

it affected every system in his body and he just went down

really quick.”

Meaux said they not only want to raise money for research for drugs that may help with seizures and to slow the progression

of MECP2, but they also want to raise awareness because not a lot of people have ever heard of it.

“Since it’s not well-known, there may be kids who have not been diagnosed,” said Meaux. “Some doctors may not know that these

tests are out there. We want to get them added to the battery of tests they do when they see a problem.”

Meaux said they would be ecstatic if

they reached their goal of $15,000 by Brody’s birthday. She said the run

is the first

event they have planned for now, but they are discussing

partnering with local 4-H clubs and selling T-shirts and bracelets

to raise money for research.

“Brody is totally dependent on others

for his everyday life,” said Meaux. “There is no cure, but there is

hope. Doctors are

waiting for funding for research to help find a treatment or cure,

and 100 percent of money that we raise will go to research.”

The cost to register for the run is $25

per person. For more information or to sign up, contact JoAnn Meaux at

jomeaux@bellsouth.net

or 439-3684.