Its very rare.
Doctors say one in 35-hundred boys are affected with Duchenne-- thats a type of Muscular Dystrophy.
In Florida, 40 boys will be diagnosed with this disease this year.
Boys with Duchenne can't walk and are only expected to live in to their mid 20's.
TV 20'S Duke Carter Followed one North Central Florida boy who has this rare disease and found out his parents just want to see him grow up as normal child.
"dad I got it."
This is Evan --- an eight year old boy Branford who got a yo yo as a gift.
After returning home from getting treatment in Ohio.
"wait I can do it…"
"Its crazy for a little kid to have to do that."
His father Bill…
"we're on our way home as soon as we leave the classroom."
Picks him up every tuesday from school since they started the trials in August.
After his dad signs him out…
nats of mom hugging him be right back tomorrow ok?"
And gets a hug from his mom its off to the airport
Where he drives for a hour to make sure he gets to his flight.
"he really doesn't like to leave."
Evan's parents say they were lucky their child is able to go on the trial after registering with "Duchenne Connect."
They were invited to Columbus, Ohio and were accepted into the program.
"it works well "
You see can see Evan working on classwork while he's getting his treatment.
A day later
"when they get back I'm just ecstatic that they're back safe on the ground"
His mom and older brother Billy being the biggest cheerleaders.
"we can begin to try to do things as normally as possible."
And after a little play time in the airport with the yo yo…
"no i don't I have to put my finger back in."
It was time for this family of four to head back hometo be ready for another trial next week.
Duke Carter TV 20 News.
Bill Procko says they have more 3 more trials.
They hope the trials will move to Gainesville around mid march.
There is a fundraiser for research to cure Duchenne tomorrow at Haile Plantation Golf and Country club at 1 o'clock.
- Your Health: Alzheimer's Awareness Month
- Stop Children's Cancer Raises Awareness for Pediatric Cancer
- Aortic Aneurysm Awareness and Warning Signs
- Your Health: Childhood Cancer Awareness Month
- Medical Spotlight: Brain Awareness Week
- Your Health: Colon Cancer Awareness Month, Screening Rates Still Low
- Skin Cancer Awareness: More Than Melanoma
- Skin Cancer Awareness: Preventing Sun Damage
- Medical Spotlight: Hepatitis Awareness Month
- Brain Awareness Week Interview