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Race against time
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| Evan Procko, 4, shows off a skateboard manufactured by Southern California skateboard manufacturer Paul Schmitt who is also a friend of the Prockos. Fifty of the boards have been made so far and several were autographed by professional skateboarders to help raise awareness and funds for Duchenne research. Professional skateboarder Bucky Lasek signed the boards as well as Bob Burnquist and Danny Way, who are X Games medalists, and other skateboarding professionals. COURTESY PHOTO |
4-year-old diagnosed with DMD may never grow up
By MICHAEL MITSEFF
mmitseff@lakecityreporter.com
O’BRIEN — The parents of 4-year-old Evan Procko are in a race against time to save the life of their son.
Evan was recently diagnosed with Duchenne Muscular Dystrophy (DMD), the leading genetic killer of young boys worldwide, according to experts in the field.
“I feel as if our son is being held captive by a monster,” mom Kimberly Procko said, her voice raw with emotion. “It’s really hard for us because we’ve been told he won’t grow up.”
An extremely rare genetic disorder, Duchenne (pronounced Du Shin) typically only strikes young boys but in extremely rare cases a milder form does strike girls. Some doctors recommend that female relatives of boys with DMD be checked at regular intervals, according to the Muscular Dystrophy Association.
Duchenne boys are born with the genetic disorder that is typically passed by the mother to the son. DMD strikes about 20,000 young boys worldwide each year.
Most of these boys will not live past their teens, and typically by age 12, many must use a wheelchair because DMD causes the muscle cells to slowly waste away and not regenerate.
“We haven’t had the gene test done because it does come through the mother, and we decided not to have more children,” Kimberly said. “Two thirds of DMD cases are from a carrier somewhere in the family, but no one in our family that I’ve found has this condition.”
One third of the DMD cases are random occurrences, according to the MDA.
Since Evan was diagnosed in March, the Prockos have been busy.
“In May, we went on a fundraising road trip,” Bill said. “Everywhere we stopped from here to California we passed out brochures about DMD.”
The Prockos returned with a renewed sense that DMD could be defeated if they worked hard enough.
“We want to make sure that he gets to do all the things he wants to do when he grows up, and we are fighting so that he will have the chance to grow up,” Bill said.
It was just after Evan turned 2 that Kimberly and her husband became suspicious that something was wrong with Evan.
“He would fall down a lot and his calves were enlarged,” Kimberly said, noting that they found out later that both are symptoms of DMD.
The parents noticed an even more disturbing symptom when they saw Evan struggling to get up off the floor.
Typically, when a boy with DMD is asked to get up from the floor, he’ll usually use a “butt-first” maneuver, sticking his posterior up in the air and then “walking” up his legs with his hands, leaning on his arms for support, according to Kimberly.
“We took him to see a pediatrician, and they told us not to worry, that he would outgrow it.”
The Prockos wanted to believe the doctors but “once we saw him playing with other children, it became obvious that he had a problem,” Bill said.
In March, any doubt that lingered was banished when Evan was diagnosed with DMD.
Since the diagnosis, the Prockos have been busy networking with other parents whose children have been diagnosed with DMD. In May, they started the Web site www.saveourson.org to raise awareness and money that is funneled directly to a non profit foundation, Cure Duchenne (www.cureduchenne.org).
Cure Duchenne is an organization founded by Corona Del Mar, Calif., parents of a DMD boy who raise money that goes directly to fund Duchenne research. The goal of the foundation, and many like it, is to bring the most promising research out of the labs and into clinical trials so that DMD boys of this generation can be saved.
“Paul and Debra Miller are the founders of Cure Duchenne,” Kimberly said. “They don’t take a salary, and their motivation is their 10-year-old son who has Duchenne.”
Muscular dystrophy (MD) refers to a group of genetic disorders whose major symptom is muscle wasting. In Duchenne muscular dystrophy, symptoms are noticeable in early childhood and quickly become debilitating. When dystrophin is missing or non-functional, it leads to degeneration of muscle tissue, according to the Computational Genomics Research Group, Department of Plant and Microbial Biology at the University of California, Berkeley (http://compbio.berkeley.edu).
A full-length movie has also been made by friends of a DMD boy who was already in a wheelchair, titled “Darius Goes West.” Darius was taken on a cross-country trip by his friends who filmed the adventure, which is available at www.dariusgoeswest.com.
The Prockos know they have a long way to go, but they are willing to do what it takes to save their son.
“We encourage parents with DMD children to not give up, but fight for the life of their child by helping to raise money,” Kimberly said. “Breakthroughs in Cystic Fibrosis were made by parents who didn’t stop fighting for their children.”
To help the Prockos raise money and DMD awareness, Lake City businessman John Goodman is organizing a benefit on Saturday at his business, Foot Long Woody’s, located on U.S. Highway 90 just west of Interstate 75.
Money raised will go to the Cure Duchenne foundation to help speed the life-saving research and clinical trials that could save thousands of young boys.
“When we returned home from our cross-country trip, we were just ecstatic to find out that Foot Long Woody’s is putting on the fundraiser,” Kimberly said.
The news came at a good time for the Prockos because “we’ve been a little bit down lately,” Kimberly said. “We are overwhelmed by the love and support we receive from our community, their hearts have been on our side making us feel loved.
“Things have already begun to accelerate in the research of this disease because of fundraisers just like this one.”
Kimberly said that Evan is very determined, a very strong-willed boy and he wants to be independent in spite of the DMD.
“It’s difficult as a parent to watch a child who wants to participate in all the things that other children are doing but know that he cannot,” Kimberly said. “Our way to deal with this is to raise funds, and people who help us raise the money for research encourage us and give us hope.”
Though increased funding is speeding up the research, time is still of the essence.
“We tuck Evan in bed at night with a smile, a hug and a kiss and then we spend hours searching the Internet for any new news of medical breakthroughs,” Bill said.
Evan was recently diagnosed with Duchenne Muscular Dystrophy (DMD), the leading genetic killer of young boys worldwide, according to experts in the field.
“I feel as if our son is being held captive by a monster,” mom Kimberly Procko said, her voice raw with emotion. “It’s really hard for us because we’ve been told he won’t grow up.”
An extremely rare genetic disorder, Duchenne (pronounced Du Shin) typically only strikes young boys but in extremely rare cases a milder form does strike girls. Some doctors recommend that female relatives of boys with DMD be checked at regular intervals, according to the Muscular Dystrophy Association.
Duchenne boys are born with the genetic disorder that is typically passed by the mother to the son. DMD strikes about 20,000 young boys worldwide each year.
Most of these boys will not live past their teens, and typically by age 12, many must use a wheelchair because DMD causes the muscle cells to slowly waste away and not regenerate.
“We haven’t had the gene test done because it does come through the mother, and we decided not to have more children,” Kimberly said. “Two thirds of DMD cases are from a carrier somewhere in the family, but no one in our family that I’ve found has this condition.”
One third of the DMD cases are random occurrences, according to the MDA.
Since Evan was diagnosed in March, the Prockos have been busy.
“In May, we went on a fundraising road trip,” Bill said. “Everywhere we stopped from here to California we passed out brochures about DMD.”
The Prockos returned with a renewed sense that DMD could be defeated if they worked hard enough.
“We want to make sure that he gets to do all the things he wants to do when he grows up, and we are fighting so that he will have the chance to grow up,” Bill said.
It was just after Evan turned 2 that Kimberly and her husband became suspicious that something was wrong with Evan.
“He would fall down a lot and his calves were enlarged,” Kimberly said, noting that they found out later that both are symptoms of DMD.
The parents noticed an even more disturbing symptom when they saw Evan struggling to get up off the floor.
Typically, when a boy with DMD is asked to get up from the floor, he’ll usually use a “butt-first” maneuver, sticking his posterior up in the air and then “walking” up his legs with his hands, leaning on his arms for support, according to Kimberly.
“We took him to see a pediatrician, and they told us not to worry, that he would outgrow it.”
The Prockos wanted to believe the doctors but “once we saw him playing with other children, it became obvious that he had a problem,” Bill said.
In March, any doubt that lingered was banished when Evan was diagnosed with DMD.
Since the diagnosis, the Prockos have been busy networking with other parents whose children have been diagnosed with DMD. In May, they started the Web site www.saveourson.org to raise awareness and money that is funneled directly to a non profit foundation, Cure Duchenne (www.cureduchenne.org).
Cure Duchenne is an organization founded by Corona Del Mar, Calif., parents of a DMD boy who raise money that goes directly to fund Duchenne research. The goal of the foundation, and many like it, is to bring the most promising research out of the labs and into clinical trials so that DMD boys of this generation can be saved.
“Paul and Debra Miller are the founders of Cure Duchenne,” Kimberly said. “They don’t take a salary, and their motivation is their 10-year-old son who has Duchenne.”
Muscular dystrophy (MD) refers to a group of genetic disorders whose major symptom is muscle wasting. In Duchenne muscular dystrophy, symptoms are noticeable in early childhood and quickly become debilitating. When dystrophin is missing or non-functional, it leads to degeneration of muscle tissue, according to the Computational Genomics Research Group, Department of Plant and Microbial Biology at the University of California, Berkeley (http://compbio.berkeley.edu).
A full-length movie has also been made by friends of a DMD boy who was already in a wheelchair, titled “Darius Goes West.” Darius was taken on a cross-country trip by his friends who filmed the adventure, which is available at www.dariusgoeswest.com.
The Prockos know they have a long way to go, but they are willing to do what it takes to save their son.
“We encourage parents with DMD children to not give up, but fight for the life of their child by helping to raise money,” Kimberly said. “Breakthroughs in Cystic Fibrosis were made by parents who didn’t stop fighting for their children.”
To help the Prockos raise money and DMD awareness, Lake City businessman John Goodman is organizing a benefit on Saturday at his business, Foot Long Woody’s, located on U.S. Highway 90 just west of Interstate 75.
Money raised will go to the Cure Duchenne foundation to help speed the life-saving research and clinical trials that could save thousands of young boys.
“When we returned home from our cross-country trip, we were just ecstatic to find out that Foot Long Woody’s is putting on the fundraiser,” Kimberly said.
The news came at a good time for the Prockos because “we’ve been a little bit down lately,” Kimberly said. “We are overwhelmed by the love and support we receive from our community, their hearts have been on our side making us feel loved.
“Things have already begun to accelerate in the research of this disease because of fundraisers just like this one.”
Kimberly said that Evan is very determined, a very strong-willed boy and he wants to be independent in spite of the DMD.
“It’s difficult as a parent to watch a child who wants to participate in all the things that other children are doing but know that he cannot,” Kimberly said. “Our way to deal with this is to raise funds, and people who help us raise the money for research encourage us and give us hope.”
Though increased funding is speeding up the research, time is still of the essence.
“We tuck Evan in bed at night with a smile, a hug and a kiss and then we spend hours searching the Internet for any new news of medical breakthroughs,” Bill said.
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| Foot Long Woody’s to host DMD benefit on Saturday |
Paul Ackroyd wrote on Aug 5, 2008 3:13 AM:
Keep on and try to stay positive,
Best wishes,
Paul Ackroyd, Manchester, England "