Family races for cure to help 4-year-old

Most with rare disease live until their 20s

Last year, Matthew James was just a normal kid in Portland, Oregon.

Then his mother, Danielle Braud James, noticed that he wasn’t growing as quickly as other children so she took him to the doctor.

That’s when she found out that Matthew, 4, has Duchenne Muscular Dystrophy, a genetic defect that will cause his muscles to progressively fail.

“When (Matthew) was born up until about a year ago he was a normal little boy with a normal life,” said Dawn Haydel Higdon, Danielle’s aunt and a resident of St. Charles Parish. “His mom went to the doctor with him and just accidently found out.”

Children with Duchenne MD are usually in a wheelchair by age 12 and only live into their twenties.

Now Danielle’s family, spread across St. Charles and Jefferson parishes, are doing all they can to help Danielle and her husband, Chris, find a cure before it is too late.
After hearing Matthew’s diagnosis, Danielle and Chris founded RaceMD.com to raise money for research on Duchenne MD.

“The (information) was just so spread out…They’ve consolidated it on the RaceMD site in an effort to help others,” said Leslie Braud, Danielle’s mother and a Kenner resident. “They are so close to helping these young boys. Our hope for Matthew’s miracle is that it happens in time to help him.”

Leslie and her husband, Francis Braud, are members of the New Orleans Track Club.

That’s where they met Rick Crozier – a marathon runner who will be racing in the April 18 Iron Man race in New Orleans.
After working with Matthew and another boy with muscular dystrophy at the park, Crozier said he has seen the “true spirit of a champion” in each of them.

The race is more than just sponsoring Matthew’s fund. All the research that Matthew’s parents have found about Duchenne MD have to do with athletics.

“My daughter (Danielle) and her husband did so much research all over the world for muscle illness and the only thing they found had to do with athletics,” Leslie, Matthew’s grandmother, said. “It was through studies on muscles of athletes that they got some of the hope-filled research that they’re dealing with now.”

Crozier has teamed up with Gulf Coast Bank and Trust to sponsor RaceMD with 50-percent matching donations up to $150.

Matthew and his parents will be coming to New Orleans on April 16 to be at the finish line of the triathalon supporting Crozier.

“In sharing Matthew’s story, our hope is just to get more information out there about the illness and maybe speed up the cure,” Leslie said.

Anyone wishing to donate to Crozier and Gulf Coast Bank and Trust’s program can visit www.makethebankpay.com before April 18, or www.racemd.com to donate to Matthew’s fund any time.