Keep Connor Cooking
Connor Barshay is a quiet, caring, 13-year-old boy whose passions include playing video games, cooking with his family, goofing around with his good friends, and making his own brand of hot sauce. Connor is also living with Duchenne Muscular Dystrophy. Duchenne is a rare, particularly devastating form of the inherited progressive muscular weakness disorder. Currently, there is no cure. Though you would never know it by talking to him, Connor lives in a constant state of pain and battles feelings of frustration at not being able to join his friends in activities like sports or bike riding. Through it all, he manages to stay in good spirits and takes great pleasure in the activities he can participate in, like cooking, gardening, and spending time enjoying the outdoors.
To learn more about Duchenne, visit https://www.parentprojectmd.org/about-duchenne/
Meet The Barshays
Connor lives in Northern New Jersey with his parents, Ethan and Michelle, and his adorable younger sister, Marissa.
Ethan is a freelance Art Director/Graphic Designer. A couple of years ago, at Connor’s insistence, father and son turned their homemade hot sauce recipes into a small batch hot sauce company. Connor’s sauces are carried at a number of local restaurants and specialty retail shops and are also available online. To purchase a bottle or score some apparel, visit their online store at www.connorssaucery.com.
Michelle is a teacher at a local K-6 school. She is passionate about her profession, and cannot imagine doing anything else. She strives to provide individualized attention to students needing a little additional assistance to help them achieve their greatest potential. Over the years she has taught 2nd, 3rd, and 4th grades as well as providing Wilson reading instruction to at-risk students.
Marissa is a sweet, sassy, energetic 9-year-old who loves gymnastics, creating art, playing with her friends, anything sweet, and, most of all, her big brother. The family also has adopted a dog named Ollie, a Black Mouth Cur.
The Breaking Point (Literally!)
A year and a half after purchasing their home, the Barshays learned of Connor’s devastating diagnosis, shortly before his 7th birthday. After exploring various treatment options, Connor participated in a clinical trial for three years at the Kennedy Krieger Institute at Johns Hopkins Medical Center in Baltimore, MD. The frequent road trips to Baltimore took their toll, but Ethan and Michelle always tried to make them special by visiting restaurants of Connor’s choice in what is a very food-centric city. He loved ordering the most exotic items he could find on any given menu, such as camel, ostrich, and alligator.
As the years passed, it became increasingly difficult for Connor to walk, and taking the stairs became impossible. The stairs bring us to October 18, 2020. That Sunday was a day like any other. The Barshay family was enjoying the beautiful fall weather outside when Connor’s body grew tired, and he wanted to head inside. Ethan carried him up a flight of stairs, as usual, to get him into their house, which is not ideal for Connor. Had they become aware of their son’s condition earlier, Ethan and Michelle never would have bought this particular house. You see, every entry involves climbing one of three flights of stairs or, in Connor’s case, being carried by his father.
As Connor was walking to his bedroom to play video games, his legs gave out. It was a bad fall. After a few hours, the pain had not subsided as it usually did. This time was different; Connor had broken his femur, which put him at risk of several life-threatening complications, including fat embolism syndrome. Ethan and Michelle had to call 911. They had no other way to get Connor out of their house safely or put him in a car while keeping his leg immobilized. In an instant, they were at the mercy of others to get him anywhere.
This Is Where You Come In!
After a valiant fight for years to handle everything themselves, and plans for eventual home modifications, the Barshays realized that the timeline for these things had suddenly
been pushed to the immediate forefront. So humble are Michelle and Ethan that asking for help is very difficult for them. That is why we are here to ask our fabulous friends and neighbors for assistance.
The list of things the Barshays need includes, but is not limited to:
1. Wheelchair access to and from the house. It is their dream for Connor to be able to come and go independently.
2. Bathroom modifications to make wheelchair access possible.
3. A wheelchair-accessible van. At the moment, they need to call an ambulance to transport Connor to and from doctors’ appointments and orthopedic follow-up care.
4. Improved wheelchair access to the kitchen and other areas of their home. With tight doorways and sharp angles, it is difficult for Connor to get around the house or outside. Cooking is one of the things he enjoys most, and he is quite good at it. Much of the family’s day is centered around food – either by tending to their garden, planning and preparing meals, or going to the local farmers market on Saturdays. Food is a big part of their lives and Connor’s identity.
On behalf of Connor, Michelle, Ethan, and Marissa, we ask you to please donate what you can. Your support will help ease the daily burdens the Barshays face so that they can continue their fight against Duchenne Muscular Dystrophy and Keep Connor Cooking.
Click on the “Donate” button on the Verona Together Facebook page https://www.facebook.com/VeronaTogether/. As a 501c3 , it is completely free of platform and payment processing fees, keeps taxes to a minimum, and you can get a receipt for tax purposes for your donation. You can also donate through our website, by clicking below. The website charges a lesser fee than most, as we are a 501c3, and we also have a PayPal option.