ROXBURY, NJ – The Roxbury house that won this year’s Roxbury Recreation Department Holiday Home Decorating Contest was adorned with its over-the-top treatment because a young boy who lives there might soon lose up to half his vision.
The child, Charlie Weynberg, 5, was diagnosed earlier this year with a form of epilepsy that might require a brain surgery procedure, an operation that could render him legally blind. Facing that possibility, Charlie’s father, Steve, decided to make their home at 3 William Court in Succasunna as visually epic as possible this year, according to Charlie's mother.
“My husband went all-out for Charlie because the chance of him having vision loss next year is pretty high," said Danielle Weynberg, a 32-year-old, lifelong Roxbury resident. She said her husband, who never before decorated the house exterior, “did it all for Charlie” and entered the decorating contest only after a friend recommended it.
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Being the first-place winner of the contest was a happy moment for the Weynberg family, one that caps a year filled with stress, sadness and expense. As explained by Weynberg on a GoFundMe page launched by her work colleague, Suzanne Moran, 2023 has been a “long, scary ride.”
Silent Seizures Every Minute
She explained that, from January through mid-summer, a local hospital’s efforts to treat Charlie’s seizures with medication failed. Taking the boy to the Children’s Hospital of Philadelphia (CHOP) also didn’t work as the youngster “progressively worsened with a major, grand mal seizure occurring in September,” Weynberg wrote.
The family’s next move was the Mayo Clinic in Rochester, Minn., where Charlie “has undergone multiple tests, EEGs, MRIs, metabolic testing, genome sequencing and much, much more, all trying to solve the root cause of the issues and stop them,” according to Weynberg. She said her child undergoes seizures lasting more than 30 seconds each minute, episodes that produce no outward manifestations.
The result of all this remains to be known, but surgery - and potential vision loss - remains an option.
“We just met with the neurosurgeon this morning,” Weynberg said earlier this week. “We’re still going through what’s the best option in the new year … we haven’t been able to come up with a solid decision yet.”
Although the Weynbergs have health insurance, they need help paying for repeated trips to Minnesota and other uncovered expenses. Because Charlie’s condition rules out air travel, the clinic visits are done by car. The family stays at the Ronald McDonald House.
“Another big thing is we have to apply for an epilepsy therapy dog, a trained service animal specifically for him,” said Weynberg. The dog, which will be able to tell when Charlie is having a seizure, will cost about $10,000, she said.
Hoping to help her brother, Charlie’s 9-year-old sister, Theresa, started a collection at Kennedy School of aluminum pull tabs to be donated to the Ronald McDonald House Pop Tab Program. Although school is now closed for the holidays, Weynberg said people can help by dropping off tabs at her house.
As of today, the GoFundMe page created by Moran has raised almost $7,000 of its $50,000 goal.
"Your donation will help Charlie's family be able to afford the incredible cost of the surgeries, the trips to Minnesota, the ability to miss work and not stress about daily living costs, and ultimately enable Charlie, the sweet-cheeks little baby, to have his family close to him during a very scary time, having brain surgery as a child," wrote Moran in creating the fundraiser.
Additionally, the Weynberg family created the "Charlie's Epilepsy Crushers" fundraising page on the Epilepsy Foundation website. It can be accessed here.
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