Family determined to find cure for rare disease, defy son's terminal diagnosis

A mother and father found a greater purpose after receiving a terminal diagnosis for their oldest son.

Boys Brave Battle 13

SAN ANTONIO - A mother and father found a greater purpose after receiving a terminal diagnosis for their oldest son.

In 2013, Maribel and Ramiro Munoz's oldest son Joshua was diagnosed with a rare form of muscular dystrophy known as Duchenne muscular dystrophy (DMD). He was already five years old at the time of his diagnosis.

Maribel and Ramiro are now advocates for the Duchenne community, not only fighting for the life of their son but fighting to find a cure for the generation of children afflicted with this terminal condition.

According to the Muscular Dystrophy Association, Duchenne muscular dystrophy is a genetic disorder characterized by progressive muscle degeneration and weakness. It is one of nine types of muscular dystrophy and mostly affects boys. Though survival into their 30s is becoming more common, until relatively recently, boys with DMD usually did not survive much beyond their teen years.

"You know, 2013 was the year he (Joshua) was diagnosed and it was, by far, the roughest year of my life," said Ramiro.

After receiving Joshua's diagnosis in January, Ramiro's father passed away in a tragic car accident in June and the couple found out they were pregnant with their third child around the same time. DMD is a genetic disorder and once Joshua was diagnosed there was now a concern that their other two sons may also be affected.

"Knowing that it only impacted boys, our initial thought was, 'Oh, my gosh,'" said Ramiro. "This is something that Joshua is facing and Jacob (Ramiro and Maribel's second son) could be facing the same thing."

"The recommendation from the doctors is take your son home, and love him and enjoy every day you have with him because the days are numbered," Ramiro said.

Maribel said the first time she was concerned that something was different was after enrolling him in a tee-ball league.

"The coach said, 'Okay, everyone is going to run around the base one time,' and he didn't make it to third. He just stopped," Maribel said.

Joshua had stopped running because his legs hurt and he didn't know why.

"As we first got the diagnosis, it was heartbreaking; devastation," Ramiro said. "You go through all of the different phases."

Both Maribel and Ramiro said they relied on the support of their family and friends but ultimately it was their faith that helped them get through.

"I think there is a purpose in why we are where we are," Ramiro said. "I believe wholeheartedly that my son is going to be part of the first generation of boys that lives through this; that is gonna see a cure."

On Saturday, October 15, 2016, the Munoz Family is hosting a 'must-attend' charity event to benefit CureDuchenne, a national nonprofit that raises awareness and funds research to find a cure for Duchenne muscular dystrophy. You can also give a donation online through their Dealing for Duchenne website.


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