Community rallies for stricken dad
By Julie Sherwood, staff writer
Posted Apr 14, 2009 @ 04:08 PM
Farmington, N.Y. —
Derek VanWyk has been doing pretty well, considering he is battling two serious diseases.
In 2005, the father of two was diagnosed with amyotrophic lateral sclerosis, often known as Lou Gehrig’s disease. The progressive, neurological disease attacks the nerve cells responsible for controlling voluntary muscles. Doctors said then he had three to five years to live.
“I am still hanging,” VanWyk said last week from his job at Ewing Graphics on Hook Road.
In late 2005, VanWyk was diagnosed with Lyme disease, a bacterial infection caused by the bite of an infected deer tick. Doctors said he probably had the disease for years; it can kill a person if left untreated.
VanWyk, 36, has undergone aggressive treatment for both diseases. That includes receiving intravenous antibiotics administered by his wife, Shelly, every-other month visits to doctors in New York City and physical and occupational therapy.
But still, Derek has lost his fine motor skills, caused by ALS, and has joint pain and dizziness caused by the Lyme disease.
He can’t write, brush his teeth, tie his shoes or do other routine activities with his hands. He can still navigate a computer mouse and keyboard, he said, skills he needs for work.
“The doctors feel he is stable,” said Shelly, 34. His symptoms have not progressed much in the last two months, she said. But they don’t want to sit back and wait for him to get worse.
“We feel strongly kids don’t ever get over losing a parent,” said Shelly. “You’ve got to show them you give it your best fight.”
With help from friends and family, Shelly and Derek have each managed to continue working, keep up on medical treatments and spend as much time as possible with their children, Leah, 5, and Ryan, 3.
Derek has also done a lot of research about his diseases, particularly ALS. He learned about a treatment being done in New Delhi, India, using embryonic stem cells.
The treatment is controversial and has not been approved by the U.S. Food and Drug Administration, he said. But the treatment has been used for eight years in India to treat spinal cord injuries, ALS and other incurable diseases, he said.
Derek hopes to have the treatment, which involves two months in a hospital in New Delhi, daily injections of stem cells and physical therapy. It takes up to five years to receive the full benefit of the treatment, he said, but the patients who have received it thus far show positive results.
Some patients have had their symptoms go away entirely, he said.
He has been corresponding with two women living in California who had the treatment, he said.
One has multiple sclerosis, the other, Lyme disease. Derek said both are improving.
While Derek has received medical approval to have the treatment, he and his family are struggling with how to pay for it.
If you go
WHAT Fundraiser for Derek VanWyk
WHERE Mickey Finn's Station One, 14 Railroad St., Victor
WHEN Thursday, April 16, 5 p.m.
DETAILS Free. Proceeds from bar tips, raffles and a silent auction benefit VanWyk
The anticipated cost for travel and to have the treatment is $50,000.
Friends don’t want the cost to stand in the way.
Toni Hardiman of Perinton, who works with Shelly at Mickey Finn’s Station One restaurant and bar in Victor, is helping organize a fundraiser to take place Thursday.
Hardiman said so many are rooting for Derek and his family.
“We want to help,” she said.