Matthew Seyfert was only six years old when his life changed forever.
The little boy, now 14, was diagnosed with autoimmune polyglandular syndrome Type 1, a condition that affects many of the body’s organs; an autoimmune disease is a disorder that occurs when the immune system malfunctions and attacks the body’s tissues and organs by mistake.
On Saturday, a Chinese auction organized by Cathie Dunn, Matthew’s aunt, was held at the Southold American Legion on Main Road to raise funds for research.
The event featured over 100 baskets and prize. All proceeds from the event will go to the National Organization for Rare Disorders’ APS Type 1 grant fund.
David and Sherri Seyfert, Matthew’s parents, were present at the Chinese auction, which has been held for the past eight years.
“They call it an orphan disease,” David Seyfert said, because it’s found in only one in two million individuals.
Currently, they said, their son has symptoms of Addison disease; symptoms can include fatigue, muscle weakness, loss of appetite, weight loss, low blood pressure, and changes in skin coloring. He’s also had symptoms of hypoparathyroidism, which can cause a tingling sensation in the lips, fingers, and toes; muscle pain and cramping; weakness; and fatigue.
Due to the rarity of the disease, little research is done and fundraising efforts are critical.
“We raise money to fund the research,” Sherri Seyfert said.
Over the past years, fundraising efforts such as the Chinese auction have funded four $50,000 grants, with another $100,000 grant coming soon. Another family in New Jersey, whose daughter also has APS Type 1, also raises funds for research.
The National Institute of Health, she added, also recently dedicated a team of world-class researchers to exploring the illness.
“I never thought I’d see that in my son’s lifetime,” she said.
Despite his illness, the Seyferts, who live in Stony Brook, keep their son’s life normal, although he does have to take medication four times a day.
The Seyferts thanked Dunn and all the Southold volunteers who come out each year to ensure the event’s success.
“We can’t thank them enough,” Sherri Seyfert said. “We couldn’t do this without them.”
For additional information about the disease, ongoing research, or to make a tax-deductible donation, go to http://apstype1.org.
