×

Dunkirk Man To Walk In Memory Of Wife

Jeff Griffin is honoring the legacy of his wife, Margaret, by raising awareness of a deadly disease called calciphylaxis during Sunday’s Walk for Kidney Health in Buffalo. Submitted photo

Jeff Griffin is hoping to raise awareness for a rare disease during the Walk for Kidney Health at Wilkeson Pointe in Buffalo this Sunday.

“For me, the goal is to raise awareness,” said Griffin, who also hopes to raise about $1,500 or $1,600 for the Kidney Foundation of Western New York. “We’ve already raised $1,407.”

Griffin, of Dunkirk, said he has a group of about 16 people who will be walking in Sunday’s event.

“That’s just our group,” he said. “They expect thousands to be there to walk in it.”

Griffin’s wife, Margaret, passed away in March from Calciphylaxis, a rare and deadly disease with no known cure. Griffin said sodium thiosulfate can sometimes be used to slow down the effects of the disease; however, it is not always effective. The disease causes sores that inflict significant pain, causing diagnosed patients to be prescribed high pain medication.

Unfortunately, Griffin’s wife was unable to take the medication due to side effects, resulting in her living in a state of constant pain.

Griffin said his wife had a kidney transplant about 12 years ago thanks to the generosity of her co-worker, who will be participating in Sunday’s walk with Griffin. He said that the kidney transplant allowed her to live for many years as she continued to bring joy to her friends, family, co-workers and the people she cared for.

As a state employee who cared for the mentally handicapped, Griffin said his wife was deeply loved by her patients. “Her smile and personality were contagious,” he said. “She was loved by many, most notably her grandchildren.”

Despite a successful kidney transplant, Griffin’s wife eventually experienced more difficulties with her kidneys.

“Her kidney started failing,” Griffin said. “When she went back on dialysis, for some reason it set this disease off in her system. It floods your body with calcium and shuts off all your small blood vessels. You get these great big wounds on your body that sometimes heal and sometimes do not heal. Hers for some reason wouldn’t heal.”

Griffin said his wife passed away eight days after being sent home with “very good” care from hospice.

The survival rate of the disease is very low since there is no cure yet.

Currently, Griffin said one doctor, Dr. Nigwekar from Boston, Mass., Hospital and Harvard University, is working to find a cure for calciphylaxis. However, Griffin said funding to fight the disease has been difficult to obtain because it is not a well-known disease.

“We’re trying to bring awareness to the disease,” Griffin said. “It’s kind of rare, but it seems like it’s becoming more and more.”

In addition to Sunday’s Walk for Kidney Health, Griffin created a scholarship in his wife’s name to help bring attention to her rare disease.

“I started a scholarship through Northern Chautauqua Community Foundation,” Griffin said, “which is going to go to a graduating senior at Dunkirk High School who is going to go into the medical field.”

Each year, the Margaret Sysol Griffin Memorial Scholarship winner will be determined by an essay scholarship, with the selected student receiving between $500 and $750.

Griffin said there will be fundraisers to raise money for the scholarship fund, which requires $10,000 to be raised over four years in order to create a permanent scholarship fund in his wife’s honor.

“We’ve already raised $2,500 since we started it in June,” he said.

Griffin is trying hard to honor his wife’s legacy. He wants his wife’s story to be shared with other people to create awareness for the rare disease.

“Margaret’s goal would have been to get the word out and to help in any way she could to help find a cure so this disease would not take anyone’s life or cause such horrible pain,” he said.

Donations for the scholarship can be made at nccfoundation.org/margaret-sysol-griffin and information on Sunday’s event can be found at unyts.akaraisin.com/ui/walk22/t/griffin

Newsletter

Today's breaking news and more in your inbox

I'm interested in (please check all that apply)
Are you a paying subscriber to the newspaper? *
   

COMMENTS

[vivafbcomment]

Starting at $4.62/week.

Subscribe Today