Meet the Boys

MEET THE BOYS

Children with Duchenne muscular dystrophy do not get the chance to live as other children do. The ability to run, play and live as any child does is taken away from them at a very young age.

Without a cure for this fatal and debilitating disease their bodies will continue to waste away. Age 12 is usually the age where these children will spend all their waking moments in wheelchairs. At age 15 all four of their limbs will be affected by paralysis, leaving them quadriplegic. By 18 years of age breathing on their own is no longer an option and they will live on a ventilator until they succumb to this degenerative disease.  

Families with a child that has Duchenne muscular dystrophy suffer tremendously. Imagine the stress of watching your child or their sibling(s) struggle daily to continue to live ordinary lives despite the challenges for years to come. Imagine the depression that parents and siblings feel knowing their loved one will succumb to this disease at any point in time regardless of age. Hard to imagine…isn’t it.

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James Anthony Raffone

James Raffone was born 3.31.09. He was and still is today the little prince of the Raffone family. He is adored by his mom, Karen, and two older sisters, Mariana and Julia. Early on his dad, Jim Raffone, started calling James- Jamesy Raffone and he is now known world- wide as little Jamesy.


Jamesy showed early on he was a stereotypical boy. He gravitated to cars and tracks for cars to go on. He quickly became fond of the movie “Cars” and especially his dad’s heavy operating equipment. Jamesy loved to ride in the dump truck and dad’s Bobcat, especially when plowing snow.

At the tender age of 4, Jamesy was diagnosed with a fatal disease known as Duchenne muscular dystrophy. Since then, Jamesy has inspired many people around the word to take part in adventure races and pushup events. As Jamesy got older, his love for cars turned into the love of building. He loved to spend time with his Dad building Legos. He and his dad have built over 100 Lego structures. Mostly those belonging to the Minecraft World. Jamesy would even go on to break two world records and set a world record by building the longest Lego chain ever, back in 2015. In doing so, the Mayor of his hometown proclaimed September 13th as Duchenne Awareness Day in Manalapan NJ. 


Jamesy continues to build these days with his Dad, but they moved on to engineering and building gaming pc’s. It started with building one for fun for himself, now he does it for children all over the world who can’t afford an X-Box or PlayStation. 


In Jamesy’s spare time he loves playing with his little Maltese named Buggles. If he had his way, he would adopt every dog he could. He has a huge heart and enjoys buying his friends skins when they play Fortnite. At the current moment, Jamesy aspires to go to college and become an animator. 


Please follow Jamesy by subscribing to Jamesy’s YouTube Channel: jamesyraffone887

Jacob Sangeorzan

Jacob is a precious 7-year old boy, who was diagnosed with Duchenne muscular dystrophy on July 9, 2019. Jacob is such a sweet boy with a smile that can light up a room. He loves fishing and has recently caught his first fish. He also loves dogs. He has three beautiful, loving sisters and strong, loving parents who are determined to fight for a bright future for Jacob. Jacob dreams of the day he will be able to run like all the other little boys. His parents have faith and determination to make his dream a reality. Their mission is to pioneer the way to a world where DMD no longer exists.

Martin Cintron, Jr.

On October 10, 2005, Martin Cintron, Jr. was born. Martin is now a 15-year-old young man with DMD (Duchenne muscular dystrophy). Duchenne muscular dystrophy is a rare genetic disease that is characterized by its progressive muscular degeneration. DMD is a horrible disease that overpowers mostly boys until their late 20s with cardiomyopathy, a heart disease being the main cause of death. Martin was diagnosed in 2009 at only 4 years old.



From the age of 10-11, Martin had to start using a walker because it was becoming too hard to bear the weight of his body. By the age of 11, Martin lost the ability to walk and has since used a wheelchair. He was diagnosed with Scoliosis at 14, and now at 15 Martin only has less than 20% range of motion in his arms and can no longer feed himself.

Martin has been in daily muscular pain for most of his life. His family’s desire is a better life for him. Martin recently joined JAR of Hope, which was started in 2013. JAR of Hope’s goal is to cure Duchenne muscular dystrophy and currently has a study called Operation: LifeLine that is using a compound named JAR914. Martin has started this study and has had his first infusion on January 19, 2021. Since the infusion, Martin has been more energetic, alert and his muscular pain is completely gone – which seems like a miracle! Martin’s greatest wish is to have his independence back. We are hopeful with each passing day that we are closer and closer to seeing Martin’s wish come true.

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