Journey of hope to fight MS

George and Sheila Brown. (photo by Violet Snow)

George and Sheila Brown. (photo by Violet Snow)

With the help of the honeybees, Sheila Meister Madera Brown is raising money to go to Moscow next March. The Phoenicia resident is scheduled for an innovative medical procedure that she hopes will halt the progress of the multiple sclerosis that has confined her to a wheelchair and could soon leave her unable to speak or eat.

The Russians have reported a 99 percent success rate at halting MS completely with a treatment called Hematopoietic Stem Cell Transplant (HSCT). “Getting rid of the disabilities you have — that’s an added bonus,” said Sheila. “Some people have been able to walk again. I just want to never progress any further.” A chicken barbecue fundraiser on October 11 at Phoenicia’s American Legion Hall and “Sip and Paint for a Cause” on October 18 at the Emerson Resort will offer opportunities to contribute to Sheila’s Journey of Hope, an effort that has so far raised $19,000 of the $60,000 required for the procedure.

I first interviewed Sheila in 2007, a year after the onset of MS, when she was walking with a cane and experiencing numbness, loss of manual dexterity, and mental fogginess. She had decided to try bee sting therapy, a controversial method that involved up to forty stings, three times a day, from honeybees. Her symptoms were so much improved that she and her husband, George, began raising bees in their back yard.

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A year later, when MS attacks had worsened Sheila’s condition, the stinging was no longer working. “I felt guilty killing bees to sting if it wasn’t doing anything, so I stopped,” she said. Meanwhile, they were harvesting honey for themselves from their five hives, leaving the rest for the bees. Recently they began to take more honey and sell it. “The bees are paying for me to go to Russia,” said Sheila. The honey has been their biggest fundraiser so far.

MS causes the gradual destruction of the myelin sheaths around nerves in the brain and spinal cord, interfering with transmission of impulses to and from muscles and sense organs. In some forms of MS, attacks occur irregularly, resulting in loss of sensation and function. Between attacks, some function may be restored, but permanent neurological damage occurs, worsening over time.

HSCT involves injections to encourage the bone marrow to overproduce hematopoietic stem cells, which are released into the blood stream. The medical team extracts the cells and freezes them. Then four days of chemotherapy wipe out the body’s immune system. The patient goes into sterile isolation while the stem cells are injected back into the bloodstream, rebooting the immune system by generating new white blood cells that have no “memory” of MS and will no longer attack the sheathing of the nerves.

Restoration of lost functioning is more likely to occur when patients are treated early in the course of the disease. After nearly a decade of MS, Sheila may not see much improvement in her current condition, but she is optimistic about halting the progress. “I don’t want to be stuck in a nursing home on a feeding tube,” she said.

“A vegetable,” added George. He is a contractor, originally from Margaretville, where he first met Sheila. She was working at the A&P and at a restaurant, and George came in for dinner. “I was his waitress,” she recalled. “He asked me to go out. When I said I had five kids, he said, ‘Kids gotta eat too.’ I bet he’s regretted that.”

“Not once,” replied George.

The couple live in the Phoenicia house that once belonged to Sheila’s grandfather, Raymond Dunn. He had been Shandaken’s first state trooper, riding a horse from town to town on his patrols. He served as town supervisor and was a contributor to the fly fishing collection at the Phoenicia Library.

Sheila’s kids now have children of their own but have been diligent in helping their mother over the course of MS. It was her son whose research turned up chemotherapy shots into the spine, which didn’t work, and then discovered the HSCT procedure.

Although HSCT has been used successfully in the treatment of leukemia and certain other cancers, the FDA has not approved it for patients with autoimmune diseases such as MS. Therefore, the procedure is rarely covered by insurance, although it is offered at Northwestern University in Chicago, at Hutchinson Cancer Research Center in Seattle, and at the Colorado Blood Institute in Denver — for a price tag of $150,000 to $240,000. Sheila did not meet criteria for inclusion in these programs because of such factors as length of time since onset and level of disability. According to the Browns’ research, the success rate at the National Perigov Medical Surgical Center in Moscow is higher than in the U.S. programs. Dr. Denis Fedorenko has supervised the 34-day protocol for over 400 patients.

But the family cannot afford the cost of the $60,000 procedure, so they have come together to raise money. Friends have donated handmade pottery and other items to silent auctions. Former Phoenicia Elementary School music teacher David Laks created a website, https://sheilasjourneyofhope.com, and a video of Sheila for fundraising efforts. Her cousin, musician Dennis Yerry, wrote flute music to accompany the video.

The next fundraiser will be Sunday, October 11, 2 p.m., at the American Legion Hall, 1045 Old State Route 28, west of Phoenicia. Included will be a chicken barbecue, salads, snacks, music, and a door prize. The public is invited. Admission is $12 for adults, $8 for children, and kids under five are free. Call 688-6877 for more information or directions.

The “Sip and Paint” event will be held on October 18 at 3 p.m., at the Emerson Resort, 5368 Route 28 in Mount Tremper. Participants will be provided with a glass of wine, a canvas, paints, and instruction from artist Nicole Saunders, who will guide each person through the creation of a painting of the northern lights. No artistic experience or talent is required. Tickets are $45, and everyone will take home a painting.

Raffle tickets are on sale now for a seven-night cruise for two from New York City to Bermuda aboard the cruise ship Norwegian Breakaway. Tickets are $15 each, six for $75, available from Sheila at 845-688-6877; Kristin at 845-616-5328; at the October 11 barbecue; or at the October 18 “Sip and Paint” event, when the drawing will be held. Ticket holders do not have to be present to win.

Donations may be made directly to Sheila’s Journey of Hope, PO Box 399, Phoenicia NY 12464; through the Ulster Savings Bank; or through https://www.gofundme.com/wy5h8gk.

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