Going to post this up here in hopes it might generate some interest, and hopefully / possibly some help. Long story short, my company (Kaz Construction) has taken on an addition project for a family in the Harlem / Main Street area to make some pretty serious changes to their home to accommodate the needs of their son, Benny. Benny has Duchenne Muscular Dystrophy and it makes it difficult for him to get around in their home, in it’s current configuration. They have chosen us as their contractor for their addition / modification project and they are in need of donations of funds, materials, labor or anything they might be able to use in their own independent fundraising efforts to help this project work for them. I’m acting as the point person here coordinating and organizing anything that might be helpful. It’s going to be quite the task but I’m hoping I can help them out. There is going to be a sizeable addition to the rear of the home, and some substantial changes to the kitchen layout / function within the existing house, as well as some easier means of access or Benny to get in and around the home.
I can’t promise that everything that might be offered to help will “work” for what we need, but don’t hesitate to let me know and I’ll see if it could. I don’t want to ask for monetary donations but it’s obviously the “simplest” form they can use. I’m not up on current means of fundraising and I honestly don’t know if they have anything set up on the internet at this point. Could be as simple as donating something for their upcoming fundraiser, and / or attending. They have already had a friend donate the windows but there’s so much more they need.
If anyone wants to provide “sweat assistance” there’s a possibility depending on how / when in the course of the project you want to help. While we want to accept help, it can’t interfere with our efforts to get this done for them efficiently and safely, within the boundaries of what we need to do here as a fully functional remodeling company.
I’m not at all a “Facebooker” so I’ll just add the link below and you can check it out for yourself.
This is a little letter Benny’s mom sent over to give others a brief description of the project:
Let me tell you about a great little boy named Ben. Ben is living with Duchenne Muscular Dystrophy. Duchenne is a progressive neuromuscular disease that eventually affects every muscle in the body, causing widespread weakness and rendering those with Duchenne unable to move. It is a genetic disorder, carried on the X chromosome, so 99.9% of Duchenne patients are boys.
It happens a little at a time so that when the boys are born, they appear healthy. It isn’t until around 5 years of age that things start to look a little different. By the time they are about 12, most of them are fully dependent on a power wheelchair. Ultimately, their lives are cut short because of this disease.
Right now, Ben is 12. He can still walk, but it’s difficult. He uses his power chair all day at school, getting up only when necessary. His story is pretty typical for a boy with Duchenne. He doesn’t have very many friends now, because he can’t do the same things they do. He can no longer run or play sports. He can’t ride a bike. The only thing he has in common with boys his age is video games, and most boys don’t want to exclusively play video games or watch TV. He does go to the playground with his friends sometimes, but he can’t really play with them, because he worries about falling.
The situation that Ben is in is difficult. His home environment isn’t suitable for him. His family lives in a home that they can afford – a 1,100 square foot split level that has the bedrooms and bathroom upstairs. Ben’s family needs to make major modifications to their home to make it wheelchair accessible but they lack the funding.
The family and several friends are holding a benefit to raise the funds necessary to build an addition on the family home, making it an environment suitable for Ben, while providing the stability of friends, neighborhood and community. This event is planned for August 16, 2015 at The Forvm in the Maple Entertainment Complex, 4224 Maple Road, Amherst, NY 14226.
We would like to ask for your help. Any and all contributions are welcome. Any items that can be used for a basket raffle or silent auction at the August 16[SUP]th[/SUP] event would be truly appreciated.
We can be contacted as follows:
Laurie Werbow and Pastor Nancy Milleville – 716-839-1314
Thank you for taking the time to read Ben’s story!
Read more and follow us on Facebook – A Home For Benny
If you do happen to help outside contacting me, please just give whomever you talk to an idea how you found out about it so they know where you came from. I’m planning on doing as much as I possibly can in one of the busiest summers I think I’ll ever have. Please don’t hesitate to contact me via PM or at my email address. Thanks in advance for any help you can offer. Forgive me in advance if I’m leaving out pertinent information / details.
