Robbie & Paul's Story

Raising a child with special needs requires extraordinary talents and skills. Families have to think creatively in order to include their child in everyday life and become masters at gathering information related to their child’s disability. Robbie and Paul's family have all these skills and many more as they raise their 2 sons with Duchenne Muscular Dystrophy. Duchenne Muscular Dystrophy is an X-linked disease characterized by gradual weakening and wasting of muscle tissue.  Usually the disease appears by 6 years of age and the patients are unable to walk by age 12. Robbie was diagnosed at 6 months after he failed to meet developmental milestones. Paul was diagnosed at birth because the family knew they carried the gene responsible for Duchene MD.  Robbie, age 15 and Paul, age 11 may spend their days in their wheelchairs but they enjoy many of the same things every young boy enjoys. They are in high school and the 5^th grade and are included in their schools with the support of a full time aide.  Their parents have worked tirelessly to provide a loving home tailored to their needs and their high ranch home has been completely renovated to meet the boy’s needs now as well as in the future. Simple tasks like showering and going outside have been carefully planned for.

The family had begun renovation of an upper deck and needed financial assistance to provide the necessary lift that would enable the boys to get up and down to the yard. This lift acts as an outdoor “elevator” where the boys can be transported in their wheelchairs to and from the house and yard. Finding service providers, navigating insurance companies and updating equipment as the boys grow has become a full time job. During a routine search, Mark, the boy's father. stumbled upon The Molly Ann Tango Memorial Foundation in a local newspaper.  The foundation was able to help defray the cost of installing the lift and the deck construction.  The work is now complete and the family explains how this will “open” up the outdoors to their sons. They can participate in the outdoor activities they enjoy more independently and socialize like every other young person their age.