Darren writes his name in the sand at the beach, his favorite place. His family is seeking to raise funds for a wheelchair van to enhance his quality of life as he faces Duchenne muscular dystrophy.
Reminder Publishing submitted photo
WESTFIELD — On Sunday, Oct. 5, from noon to 5 p.m., the Skyline Beer Company at 98 Southwick Road in Westfield will be hosting “Wheels for Darren,” a day filled with raffles, live music and incredible food to raise money for a wheelchair van for Darren, a 13-year-old with Duchenne muscular dystrophy who has strong ties to Westfield.
Darren’s grandmother Kimberly McNutt, former owner of Mama Cakes in downtown Westfield, said her family, along with Skyline Beer Company owner Lisa Pac and Mackenzie Lefemine, owner of Lefemine Photography, have pulled together with the goal of getting Darren a wheelchair van.
“Skyline Beer is hosting the fundraiser, which is really nice of them,” McNutt said, adding when Pac heard that the family was trying to hold a fundraiser to help them raise money through a GoFundMe account, she asked them if they would like to hold it there. Lafemine then suggested seeking raffle prizes and baskets, and selling VIP tickets to enhance the event.
Skyline will be donating 10% of all food sales to the cause, and baking up a special batch of Mama Bear beer for the day as well — $1 from every pint sold goes right to Darren’s family.
“Lefemine Photography has offered her services for all of the photography needs. Mackenzie, owner of Lefemine Photography, was just the little push we needed once we started thinking about a fundraiser. She had the ball rolling on raffle prize donations before we could even think of a name for the fundraiser,” McNutt said.
Special VIP tickets are available for purchase — a $50 VIP ticket includes one dozen baby Mama Cakes cupcakes, made possible by the generous use of B’s Breads commercial kitchen, and one door prize entry.
“We’ve been trying to get Darren a wheelchair van for a couple of years now. He’s wheelchair bound, broke his leg this summer and can’t really bear weight. He probably won’t be able to,” McNutt said.
She said Duchenne is one of those illnesses that in the early years, the family had no idea anything was wrong other than some delayed physical abilities. “They go from being able to somewhat run to complete decline, where he can’t do any of the things the other kids his age can do.” The life expectancy for a child with Duchenne is 18 to 22 years, and Darren is at an advanced stage of the disease.
McNutt and her husband Charles McNutt, who now live in Clinton, Connecticut lived in Westfield for 30 years and raised their family there, including Darren’s father Steven McQuade, and Sarah, Emily, Abigail, Isabella and Charles McNutt, all of whom took time behind the counter at Mama Cakes.
“Everyone who went into Mama Cakes knew our kids. They all worked there,” she said.
Two years ago, Steven McQuade moved Darren, then 11, and his family to the Berkshires, where they found a strong support system for their son’s illness and were able to lease a handicap apartment.
McNutt said Steven’s wife Merry McQuade, Darren’s stepmother, has family members in the area who are nurses. A prominent family there has also started a foundation in the name of their own son for people with Duchenne. “They had a lot of information and support that Darren and Steven needed,” she said. “They gave him a lot of things for his home. My son can’t work because he has to take care of Darren. None of it is easy, you’ve got to fight for everything.
“Right now it’s day by day. As a family, because we can’t do anything about the progression of his illness, the only thing we can do is support him and give him the best quality of life.”
McNutt said her home in Clinton is five minutes from the beach, which has a special significance. “Darren loves the beach — it’s his favorite place. Since he was little, he used to lay in the sand. We used to take him to the beach all the time — we were working hard to be able to afford to take him to the beach.”
“Last summer, we were able to get him down to the beach,” she said, sharing an earlier photo of Darren in his favorite place. “He’s got a stick, and wrote his name in the sand. This is where the wheelchair van is essential. We haven’t seen him since he broke his leg, because we have no way to transport him,” McNutt said, adding they keep in touch through video calls. “It takes an army to care for somebody with Duchenne. In order for him to live freely and have the best quality of life, he needs the wheelchair van.”
“If you meet him — he’s amazing. He’s funny, he has his wisdom. He’s been saying since he was 8 years old that he was going to die young. “‘I am what I am’ is what comes out of his mouth,” McNutt said.
The family first started the GoFundMe page two years ago, which has raised close to $10,000, probably only a quarter of the amount needed. They have also sought grants, which she said only cover a certain portion of brand new vans costing $60,000 and above, and require hefty loans.
The fundraiser at Skyline Beer Company on Oct. 5 will hopefully help the family towards its goals. Organizers are still looking for raffle baskets and services. Advance $50 VIP tickets that include one dozen baby Mama Cakes cupcakes and a raffle ticket are available by calling Emily McNutt at 413-225-1589. For people who cannot attend the event but would like to donate, the GoFundMe page is available at gofundme.com/f/darrens-wheels.
McNutt said she is thankful for all of the businesses and people that are stepping up to help. “We are going to do a thank you board for all the different businesses that have donated,” she said.
“We’ve had close relationships circling back. There are a lot of people helping us that basically have come across us somewhere. We’re grateful that we’re getting the response we’re getting. Whatever the results are, we’ll be very happy with them.”
