Meet Joshua

Joshua was born on May 2, 2001. He was a very happy baby, and as far as we knew, a healthy young man. As Joshua grew, his gross motor skill development lagged behind that of children of a similar age. Sensing an abnormality, Kaaren took Joshua to a physical therapist. The PT seemed to immediately know there was an issue and recommended we have a blood test as soon as possible. On a Friday night in late January 2006, we received a midnight phone call from Joshua’s pediatrician that forever changed our lives. The doctor reported the results from Joshua’s blood test indicated significant “abnormalities” - the muscle enzymes present in his blood numbered greater than 26,000. Normal levels are in the low hundreds. Four months later, after numerous doctor visits, a muscle biopsy and genetic blood screen, Joshua was diagnosed with Duchenne Muscular Dystrophy.

For Joshua, every day presents new physical challenges. Since his diagnosis, Joshua's muscles have rapidly deteriorated, and in November 2010, he lost the ability to walk. While this disease may take away his physical abilities, it doesn’t affect his mental faculties. In fact, Joshua has been a straight A student for the past four years. Joshua is doing all he can to bravely confront this disease and hasn’t allowed his physical condition to break his spirit.

One of the things he can do is to serve as an advocate to raise awareness about Muscular Dystrophy. Between 2010 and 2012, Joshua served as the Muscular Dystrophy Association (MDA) Goodwill Ambassador for Northern Virginia (2010), the Commonwealth of Virginia (2011), and the District of Columbia (2012). Now, Joshua has an even bigger platform and possibility to make a lasting impression on those who share his fight against this disease.

In March of 2011, Joshua's Hope Inc, a non-profit corporation, was created in honor of Joshua to help him, his family, and other families who are effected by this disease.

Living With Duchenne Muscular Dystrophy

  • There is no history of Duchenne in Joshua's family.
  • Blood tests confirmed his mom is not a carrier and none of his siblings are affected.
  • He wore orthotic braces (“boots”) at night to stretch his tendons. 
  • When he was seven years old, he started to use a manual wheelchair to travel longer distances.
  • He lost the ability to walk in November 2010 when he was nine years old and began using a power wheelchair.
  • Normal activities are very difficult for him.
  • His arm strength has decreased greatly over the past three years, and he can no longer lift his arms over his head.
  • He sleeps in a hospital bed, which allows him to adjust his position and sit up.
  • On July 23rd, 2014, Joshua had an operation to correct the curve of his spine. Doctors inserted two titanium rods to straighten his back.
  • He visits the MDA Clinic at Children’s twice a year and also meets with pulmonologists, cardiologists, geneticists, and neurologists.
  • Although he suffers from Duchenne, he has been very fortunate to go on a Make A Wish trip, host the MDA Telethon on tv, hang out with firefighters, and go to MDA Summer Camp.