After Three of Her Family Members Succumb to Illness, Bridgewater Native Raises Awareness for Rare Disease

Joan Olszyk has survived unspeakable tragedy with the losses of her husband and two of her three children, who all succumbed to the same disease—but now a walk is being held though Somerset County to provide awareness of that little-known disease in honor of Hillsborough's Olszyk family.

On April 10, a charity 5K walk will begin at the offices of Dr. Deborah Neiman in Bedminster, and supporting the Loeys-Dietz Syndrome Foundation.

“This disease has tragically afflicted three members of a family in our community, and their plight through these tragedies is a wonderful human interest piece regarding the strength to survive and the ability to persevere through life and with a hope for the future,” Neiman said.

For Olszyk, who grew up in Bridgewater and has lived between there and Hillsborough throughout her life, the disease that claimed three members of her family was nameless for more than 10 years.

In 1995, Olszyk’s husband, Eugene, had an abnormal brain scan and was prepared to go to the doctor to have more tests—but he never made it. Instead, he fell ill, Olszyk said, and passed away at the age of 40.

“We didn’t think about doing an autopsy, and we knew there was something not right in his brain,” she said. “It presented as an aneurysm, but I had my kids tested after that.”

Then in 2005, Olszyk said, her 27-year-old daughter, Christine, was feeling ill one night, and she was taken to Somerset Medical Center.

“The following morning, she died,” Olszyk said. “We were shocked.”

Devastated by the loss, Olszyk said, she took advice from Neiman to start checking her two sons’ hearts. They found out that both boys had larger vessels in their hearts than were considered normal, she said.

In May 2006, Olszyk’s oldest son, Michael, went in for surgery to repair his heart, but a week later, he got a massive infection and was in the hospital for months, suffering oxygen depravation to his brain.

“He ended up with a brain injury, but he knew what he had to deal with,” Olszyk said.

Just about when they learned the disease that had claimed the lives of both her husband and daughter was called Loeys-Dietz Syndrome, Olszyk said, Michael, 29, died in November 2010.

Since then, Olszyk’s youngest son, Jason, has been operated on for the specific disease and is doing well.

“We figured it out in time to take care of Jason,” she said.

Neiman said she assisted Olszyk, who had worked in her office as a nurse, to find a clinic at Johns Hopkins University School of Medicine, where Jason Olszyk, 25, had his surgery.

“The care and support that he and [Joan] have received from them has been incredible, and I felt it would be worthwhile to bring some recognition to the public about this disease,” Neiman said, “and about the availability in this country for state-of-the-art care, support and compassionate care.”

Olszyk said Loeys-Dietz Syndrome is very new, just like its research foundation, which will benefit from the walk.

“It was not really known until 2005,” she said.

According to the Loeys-Dietz Syndrome Foundation website, the disease is a genetic disorder affecting the connective tissue in the body. Those with the disease have medical features in the musculoskeletal, skin and cardiovascular systems, and it manifests in many different ways.

But, Olszyk said, not many people, including doctors, know much about this newly-recognized disease.

“There is a drug that stops the progression of the disease and minimizes aneurysms, and those that are there get stabilized,” she said. “That’s a big deal, so that’s the awareness part about this.”

And for this reason, Olszyk said, she is excited about the charity walk.

“I just found out about this disease, so there must be others out there with no idea what’s going on,” she said. “If people can learn about it, that’s awesome. This isn’t common.”

With preregistration for the walk by April 1, the cost is $20, and $25 after April 1, as well as $5 for a kids run for children under 10 years old. All of the money raised will be donated to the Loeys-Dietz Syndrome Foundation, Neiman said.

“We are also sending out information and requests to local businesses to participate as sponsors or give donations for goods,” she said. “In particular, we are talking with Sanofi-Aventis because they are the producers of the drug, Avapro, which is being investigated to treat the disease.”

“However, we have reached out to all the local companies and pharmaceuticals, as well as the hospitals in Somerset and Morristown where Olszyk’s family members have been treated,” she added.

Neiman said she has known Olszyk for more than 20 years, and she wanted to do this as a way to honor her and provide awareness about the disease.

“Most importantly, I do believe that [Joan] has survived such incredible tragic losses in her life, more than any one individual could possibly imagine living through, and the courage and strength that she has exhibited in bringing herself and her family through these tragedies, as well as being able to continue working as an RN and helping others, is unique,” she said.

“Her story is truly and tragically extraordinary, and her strength of character and continued hope for life can be an inspiration as well as a means to gain insight for others regarding how to overcome incredible adversity.”

Olszyk—who said she knows Neiman has done walks for other foundations in the past and was pleased that she chose this foundation this year—said she is also honored to be a part of the walk for this disease.

“Especially with Michael, he fought so hard after a second surgery and he knew what his life was like before his brain injury and what it was like after,” she said. “With how strong he was, he kept fighting and this walk is about remembering my family and is in memory of them.”

“I hope the walk helps someone know where to go for this disease,” she said. “Jason’s still here, and people can see that there is promise and hope for the future.”

The walk will be held April 10, with registration at 9 a.m. and the walk beginning at Robertson Drive in Bedminster at 10 a.m.

For more information, and a link to a registration form for the walk, visit Neiman’s website.