Meet Ben

Ben was born March 15, 2003.  While he appeared healthy, Ben always seemed slower than everyone else and he struggled with stairs.  When he was 3 1/2 he fell off the fourth stair, landing on the concrete basement floor and fracturing his skull.  Mom pushed for some testing that turned up a gross motor delay which resulted in physical therapy during preschool.  It wasn't until he started kindergarten that the new physical therapist spotted some unusual signs in Ben.  His pediatrician ordered blood work which turned up the possibility of Duchenne Muscular Dystrophy.  That diagnosis was confirmed by genetic testing a few weeks later.

This family's world turned upside down.  Ben now needed to see several specialists that could provide care for him.  The local hospital didn't have enough experience with Duchenne so Cincinnati Children's Hospital came into the picture.  Ben travels at least twice yearly to Cincinnati for multi-disciplinary clinic appointments, where specialists from all fields examine him.  He spends a week each time he goes, having 2 days of testing followed by a full day of doctor visits, with a day of driving on each end.  He is fortunate enough to have been selected for a few clinical trials along the way, but that sometimes requires extra trips to Cincinnati. He is currently enrolled in a clinical drug trial that requires travel to London, Ontario. 

Ben's condition has deteriorated since his diagnosis seven years ago.  He uses a power wheelchair all day at school and cannot walk very far.  He uses a stair lift at home.

The family home is not currently wheelchair accessible and cannot be easily adapted.  It is a 1,100 square foot split level with the bedrooms and bathroom located upstairs.  With only 400 square feet downstairs, the layout is not suitable for Ben's wheelchair. Right now, the chair charges in the garage because there is also no access ramp.  They need a first floor bedroom and bathroom for Ben, as well as another bedroom so a caregiver can be nearby.

Ben is a pretty regular kid in most other ways.  He loves animals and playing Xbox.  He loves science and muscle cars.  He likes to swim and wants to go to England.  He collects autographed sports memorabilia and likes to work in the garden.

The financial burdens that any family with a chronically ill family member faces are tremendous.  Duchenne poses unique challenges because while trying to provide for Ben, the family is also trying to provide a life for their two unaffected boys, aged 13 and 14.

The family has reached it's financial limit after purchasing a van that is being modified with a ramp.  They can only access a limited amount of money in the form of a home equity loan.  They are in need of assistance to raise the necessary funds to build an addition and provide an appropriate interior layout and design so Ben can navigate the home effectively.

Any assistance is appreciated.