Community Helps Siblings Battling Rare Disease - KLTV.com - Tyler, Longview, Jacksonville |ETX News

07/25/07-Mount Pleasant

Community Helps Siblings Battling Rare Disease

Justin and Rachel Barker were born and grew up just as active as their friends.  Now, a rare disease has taken their independence, their mobility, and it's stealing their speech. 

Now their family looks to a future of constant care, and a community is coming to help.  You can too.  

For Justin and Rachel, as they are growing up, the disease is taking the family's hope of a normal life.

"If you see your child fall and scrape their knee, you heart hurts for them.  But to watch your child struggle so hard to even speak -- Justin gets to the point that he hardly talks, because nobody understands him.  And he used to be so outgoing and talking," says their mother Angie Jimenez.

It's called Hereditary Spastic Paraparesis.  It's a deterioration of muscle control.  It's not fatal, but where it stops no one knows.

It started slow for Justin.

"He was kinda stumbling.  I thought it was a growth spurt, and that he'd grow out of it -- that he was gangly.  But he never did," Angie says.

Now the 9 year-old travels a lot in his mother's arms.  He just got back from a Lions Club camp, and along with his little sister to Sea World.

Rachel's got that bright smile, but only a little more mobility. It is getting worse.

"I say [to doctors], 'How bad will it be?'

"They don't know. I ask if there is anything to be done, and they say not right now. They're working on it.  They're doing research," she says.

Rachel loves to help Justin color is coloring books.  Rachel wants to be a teacher.

Justin needs a motorized wheelchair now, and the family needs a van with a lift.  Insurance covers only a fraction of the total cost.  Friends and family plan a benefit for Friday to help the whole family who daily cope how cruel this disease is.

Just this week, Justin and Rachel went to Sea World in San Antonio and heard what no child wants to hear there.

They couldn't ride.

"Rachel was so excited about riding. I had to walk off and cry, and I was so mad and so hurt," Angie says.

"You want life easier for them, and to watch them struggle from a small age, and to know that life isn't going to get any easier for them -- it's really, really hard."

They just pray for a cure, and have a whole community right there with them.  

The benefit for Rachel and Justin Barker is a kids' fishing tournament, auction, dinner, and a performance by Mineola's "Nashville Star" Kacey Musgraves.

It's Friday night from 5:30 p.m. to about 8:30 p.m. at the Heart's Bluff Game Ranch, north of Mount Pleasant.

For tickets, call 877-379-2114.

You can also give direct help to the family to get that van they need.  You can give to the Justin and Rachel Barker Fund at Guaranty Bond Bank in Mount Pleasant.

Morgan Palmer, reporting morganpalmer@kltv.com

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