True Love Survives with Life-saving Ehlers-Danlos Surgery
Kyli and Dustin are an engaged couple who both have Ehlers-Danlos Syndrome. Due to a major surgery, the revised date of their union is Oct. 10, 2015. Here is their story of how love prevails despite health setbacks:
SEAVILLE – “When 28-year-old Dustin Wood placed an online ad in the Jersey Shore’s Craigslist wanted section, seeking donations of “mismatched chairs for wedding of our dreams” he wasn’t kidding. This was a day that both he and his fiancée, 29-year-old Kyli Wolfson of Seaville, had been dreaming of for more than two years. It is a dream that almost didn’t come true.
The couple’s original wedding hopes had been dashed in 2012 by the tragic onset of a variety of life-threatening symptoms of Ehlers-Danlos syndrome, a disorder both Wood and Wolfson live with. According to the Mayo Clinic, Ehlers-Danlos syndrome is “a group of inherited disorders that affect the connective tissues—primarily the skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provides strength and elasticity to the underlying structures of the body. People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin.” The syndrome can also affect other organs such as the pancreas and increase the onset of various health obstacles, to include diabetes.
Having met in 2010 in Jacksonville, Fla. while on a support group trip for persons with Ehlers-Danlos syndrome, the two connected right away.
“We instantly fell in love,” said Wolfson. “It was love at first sight.”
Four months later, Wood and Wolfson became engaged and set a date to tie the knot. But Wolfson said she suddenly woke up one day and felt like someone had kicked her in the stomach. Unable to eat and in tremendous pain, Wood rushed her to the hospital where Wolfson was diagnosed with a rare and severe pancreatic condition. Within a short time, Wolfson was down to 82 pounds and required a feeding tube.
“They told us there was nothing else they could do,” said Wood.
With nowhere else to turn, the couple opted to sell or store everything they owned and travel to the University of Minnesota, Fairview for a risky new procedure that could potentially save Wolfson’s life. According to Wood, the rare operation has only been performed on 500 patients worldwide and medical professionals are not sure of the long-term outcome, but the couple agreed they felt it was their last option. Once notified that Wolfson was an approved candidate and qualified for the surgery, the couple waited four more months before a date was set for the procedure.
In January 2014, Wolfson endured a 14-hour operation during which surgeons removed her pancreas, gall bladder, appendix and spleen. They then extracted pancreatic islets and injected them into Wolfson’s liver. Within eight months of the procedure, Wolfson was no longer insulin dependent and on her way to recovery. Although there is no certain future, the couple said that Wolfson’s prognosis is much better than it was before. She credits Wood’s never-ending love and support during the process as a critical component to the success of her recovery.
“I get emotional thinking about it,” said Wolfson. “He loved me through it. Dustin nursed me back to health. I was so scared, and he was there to comfort me.”
Wood countered by saying that every year, Wolfson writes him a poem for his birthday or makes him something handmade he can keep close to his heart forever.
Both Wood and Wolfson have always dreamed of a vintage wedding and have reset the date of their union for Oct. 10, 2015. But due to the insurmountable medical costs, they also agreed that a simple “home wedding” would be best with around 40 to 50 guests. While flipping through magazines and researching how to plan a wedding on a tiny budget, Wolfson came across and fell in love with a photo showcasing mixed and matched chairs. So Wood took matters into his own hands.
“She is dreaming of a vintage-style backyard wedding,” Wood wrote in the Craigslist ad. “She mentioned the other day how much she would like wooden or mismatched chairs instead of the usual white folding chairs. She spends hours a day just looking at pictures and dreaming about how our wedding day will look.”
Wood went on to write that he had no idea where to get the chairs, but he figured he’d reach out to people who may have chairs that they do not want or need and would like to donate, regardless of condition.
Although their journey to the altar has been one of sacrifice, hope, love and – most of all – survival, Wolfson said it’s pretty simple.”
“It’s not about a big, luxurious, elaborate wedding, as much as it is about telling our story,” she said. “It’s about giving.”
They want to keep the wedding simple, with a vintage decor. They are looking for donations of wooden or mismatched chairs instead of the usual white folding chairs for their “backyard” wedding.
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