Meet Evan

Evan is a happy 16 year old, living with Duchenne Muscular Dystrophy (DMD), with a very positive outlook on life. He enjoys video games, cars, WWll history, and all kinds of music, especially classic rock. He also likes to watch Pawn Stars, Pawnography, American Restoration, and Counting Cars. When he was born, he was a very healthy, happy baby. He was 19 ½ months old when he took his first steps, which was a little later than most, but that didn’t concern his pediatrician. It wasn’t until he was 5 years old when his kindergarten teacher said something about his gait; she said he kind of waddled. I had his pediatrician take a closer look and from there he sent us to the lab. The lab work showed that Evan had a high CK (Creatine Kinase) level, which could have been due to several different reasons, one of which is Muscular Dystrophy. He then had further testing and was diagnosed with Duchenne Muscular Dystrophy on December 16, 2003. His teacher told me that she had seen that in another boy and thought that might be the case with Evan. We never expected that diagnoses, as we have no history of Muscular Dystrophy in our family. Evan continued to be quite active for years, playing outside, swimming, riding his scooter and even riding a bike some. When he was 14, and in 8th grade (at the same middle school as Joshua), he started using a wheelchair for transportation on the bus (to and from school) because he was unable to climb up and down the stairs.

This year he is in 10th grade at a very large high school with 2,700 students. He has slowed down considerably and has been using a wheelchair full time at school and outside of school whenever he goes to the doctor, or on other errands, and very soon he will need to use it in our home.He is currently using a loaner wheelchair from MDA (Muscular Dystrophy Association). We have a new, more comfortable, manual/power wheelchair on order, which costs over $16,000. We do have insurance that will pay for most of that expense, but we will have to pay $1,390.00. We have also recently found a 2007 Dodge Grand Caravan wheelchair accessible van. We were able to obtain a loan for the $14,900 vehicle, but we need assistance to make the monthly payments. We live in a small 3 story home; the bedrooms are upstairs, as is the full bathroom. Right now Evan is crawling up the stairs to get to bed and to get a shower. It is getting harder and harder for him to crawl up the stairs, and when he does reach the top, he is out of breath and has to lie on the floor for several minutes. Then he crawls into his bedroom and we help lift him into bed. Evan also crawls up and down the stairs inthe garage to get in and out of our home. We have had several construction companies come out, survey our home and give us estimates on what home modifications we can have done that will make Evan’s life easier and safer. We have estimates ranging from $28,000 - $45,000 to extend our first floor powder room, put in a curb-less, wheelchair accessible shower, and add a small bedroom within our 2 car garage with a ramp to gain entry into the house, which also means plumbing, electric & HVAC work.

Unfortunately, we are unable to come up with the funds that are needed for everything that Evan needs now, plus he will have additional medical needs in the future. We would be most appreciative of any size donation you are able to give to help Evan and improve his quality of life! No amount is too small! Thank you so very much!