“Hi, my name is Logan, will you be my friend?”
Sometimes in life the plans and dreams we have don’t unfold the way we thought they would and great heartaches happen. At age 5, Logan, was diagnosed with Duchenne Muscular Dystrophy, a genetic condition affecting mostly boys that deprives muscles of the necessary protein dystrophin, causing weakness, atrophy and loss of bodily functions. At 9 years old, Logan lost his ability to walk and has been in a wheelchair since. He is now 12. There is currently no cure for this life-robbing condition, and Logan’s needs are great both physically and financially.
Most of us take for granted the simple things in life like turning on a faucet, washing your face, combing your hair, turning over in bed, scratching an itch, getting dressed, going to the bathroom, or even just lifting your hand to tell someone “Hello!” These simple things and so much more, Logan can no longer do because of his progressive muscle weakness; yet he never complains. He always has a gentle smile for everyone, especially those who need to lift and transfer him. At 12 years old, Logan has grown much so lifting him is difficult. His big brother Devin, now 14, helps his mom and dad tremendously and is devoted to Logan’s care, often sacrificing time with his friends to be with his brother. So you see, the disease affects the whole family.
For a child in a wheelchair, most of the time they feel like people are looking at their wheelchair and not at them. They become very self-conscious and somehow feel less likeable than “normal” people because of their disabilities. During Logan’s first week of junior high this year, he asked his mom if anyone would be his friend. Can you imagine the heartache a mom would feel when people can’t see beyond the disability to the wonderful child he is?
The little house that Logan and his family share is not wheelchair friendly. It is an older home with small door openings and a raised foundation with steps to the entryways. Though there is a ramp in the front of the house, there are only steps in the back, so Logan has only one way to enter and exit the home. Not only is this frustrating, if there were a fire and the front entry was not accessible, how would Logan’s family get him out? Bathing Logan is yet another difficulty. The house has one full bathroom with a tub/shower. The bathroom is the size of a closet, so the wheelchair will barely fit; and then there is no room for anyone to maneuver to transfer him to the toilet or shower. Though Logan has a bath seat, he has to be lifted up onto it by his mom and Devin (extremely difficult), and then the bath space is so cramped the bath system is often frustrating and exhausting to use. Life is hard enough knowing your child has a horrible disease and a very uncertain future. But when your home works against you as well, hope can seem, well, hopeless.
Passion 4 K.I.D.S. is working with the family to enlarge the door openings in the house, tear out the current bathroom and enlarge the space with a chair-friendly roll-in shower as well as build a deck with a ramp in the back of the house so that Logan can have two entries in and out of the house.
Providing bookkeeping for funds raised
Helping to get his story out
Being a support system for the family
Logan’s disease is progressive and incurable, however he has a wonderful outlook and support system.