My name is Joseph Schlenger. I'm 13 years old and a straight A Honor student at Sayreville Middle School. I love creative writing, history, digital music production, and vexillology, the study of flags. I attend mass every weekend and have great faith. I love my family and enjoy the trips and adventures I plan with my mother and other relatives. My name is Joseph Schlenger, and sadly, I have CMT.

Joseph was born on a snowy day in January 2011. He was a happy baby who loved music and books.  He started walking at 15 months and while that was a little late, his doctors weren’t overly concerned.  As a toddler, Joe loved exploring new places but needed to take frequent breaks.  He greatly enjoyed trips to the park.  The slide was his favorite, though he had a difficult time getting himself up to the top. By the end of Preschool, Joe was already reading on a second grade level but still climbing stairs with two feet on a step.  It was also during that year that Joe had kidney surgery and ureter reimplantation to help his muscles move waste from the kidneys.  Always wanting to be out making friends, we gave soccer a try.  After the first few weekends you could tell it wasn’t fun for Joe, but he couldn’t quite verbalize why.  Next we tried TBall Little League.  That time was met with lasting friendships and several rolled ankles.

Joe wanted so badly to be part of something, but no one, not even his doctor, could explain the challenges he was facing.  In Kindergarten, Joe’s friend Landon got him involved in Karate, and Joe loved it!  Then, he started sparring, and the injuries were popping up left and right. After that came the phone call from the elementary school nurse when Joe was in first grade. 

“Joe fell twice this week and each time he said the same thing, ‘My legs just gave out.’ I think he needs to go back to the pediatrician.”  

Before we could even get into the pediatrician, Joe suffered another injury in karate.  Immediate XRays at PM Pediatrics brought us to Dr. McPartland at Pediatric Orthopedics.  Initially, Joe was diagnosed with Hypermobility Joint Disorder and started physical therapy at Robert Wood Johnson Children’s Specialized Hospital.  

Fast forward to 4th grade when Joe returned to school after the Covid shutdown and months of virtual instruction. He was excited to begin a new chapter at the UES, but had trouble navigating stairs and got separated from his class on his first day.  The guidance department, along with special services, assembled immediately to come up with a plan and outline accommodations, still with a medical diagnosis of Hypermobility Joint Disorder.  Simultaneously, other family health issues were coming to light.  Now doctors began to suspect and test Joe for a Neuromuscular Disease known as Charcot Marie Tooth (CMT) Disease.  Genetic testing confirmed in January of 2022 that Joe did indeed have this disease. Charcot Marie Tooth Disease is a disease of the peripheral nerves that control the muscles. It is progressive and degenerative in nature, causing loss of function and sensation in the hands, arms, legs and feet.  CMT affects only 133,000 people in the United States. Currently, there is no cure for CMT. Does this disease limit Joe? Yes.  Has it stopped him? No way!

Since Joe’s diagnosis in 2022 he has undergone 3 major surgeries to reconstruct his feet and transfer tendons in his legs, ankles and feet.  Without these surgeries Joe would not be able to walk. With the help and guidance of neurologists, orthopedics, physiatrists, and physical therapists we can stay on top of things, and truly learn as we go.  

Joe does walk differently and requires assistance. He experiences a lot of pain in his feet and benefits from frequent breaks.  He suffers from patellar instability, or floating kneecaps, and is therefore prone to knee dislocations. While Joe can write with a pen, typing is much easier.  Joe has difficulty tying his shoes, balancing to walk and stand and getting up from a seated position.  As with a progressive disease Joe knows this list of challenges will grow over time, and while CMT will not claim his life, it will certainly alter how he lives.

Joe uses his time and energy to actively work within the CMTA community.  He has organized local fundraisers and assembled teams to walk in the yearly national Walk4CMT walkathon.  In the past 3 years, Joe and his team have raised a combined total of over $10,000 for CMT research, working for a cure.  Joe's mission is to make sure that all people with disabilities, especially kids, can have their voices heard.  He plans to work incessantly to give a voice to those who can’t speak for themselves and help everyone find the courage to stand up for themselves.

Joseph Schlenger has CMT, but CMT doesn’t have him!