Fighting time: Father raising money for his sick son
A crippling form of multiple sclerosis struck 64-year-old Gary Fowler of Edmonds nine years ago.
Last year, his son Brandon Fowler was diagnosed with an even more aggressive form of MS, one that doctors say could put him permanently in a wheelchair within a year.
Father and son decided to fight back.
Working with Help Hope Live, a nonprofit that for more than 30 years has helped families raise money for medical expenses, the Fowlers are hoping to raise $50,000 for a potentially life-saving operation for Brandon.
It’s a stem-cell transplant that would be performed in Moscow by Denis A. Fedorenko at the A.A. Maximov Department of Hematology and Cellular Therapy, National Pirogov Medical Surgical Center.
They have until Sept. 28 to raise the money, which just this week was extended from its original Sept. 8 deadline.
“The doctor is the best in the world,” Greg Fowler said. “He’s built two new wings for foreigners because so many are coming to him. So if we don’t get the funds by Sept. 28, we’ll have to go to the end of the line, which could be in another two years from now.”
Although Brandon’s procedure – HSCT, or hematopoietic stem cell transplantation – is not yet approved in the U.S., it is in the trial stage at the Northwestern Medical Center in Chicago. That’s why it would be performed in Russia, where the cost is much lower.
Some call the procedure a miracle treatment, and the National Multiple Sclerosis Society admits it is promising.
The Fowlers have raised more than $30,000 through Help Hope Live, which manages all of the money raised and pays bills directly.
Ask Fowler about his son’s medical woes, and he can turn into a medical encyclopedia. In addition to MS, Greg has tested positive for Lupus and other autoimmune disorders. He frequently blacks out and has had multiple extended hospital stays.
With the stem cell transplant, patients undergo chemotherapy to kill most of the immune system. Doctors take stem cells from the bone marrow and process those in a way that will reintroduce stem cells into the body.
A former hiker
It was nine years ago that Fowler, a member of the first graduating class of the old Woodway High School in 1970, knew there was something wrong with himself.
An avid day hiker and leader of a club, he was walking down a trail in the Olympics when something popped in his back. His leg became numb.
Doctors diagnosed him with neuromyelitis optica, an autoimmune disease similar to MS, which simultaneously inflames and damages the optic nerve and spinal cord.
Fowler is blind in his left eye, and is paralyzed from just above the waist to his toes. With the help of a wheelchair, he’s able to attend church and visit his neurologist, James D. Bowen, director of Swedish Multiple Sclerosis Center.
Fowler said he’s gained weight since his diagnosis, is in pain all the time (morphine and oxycodone take the edge off), and is mostly confined to his bed at an assisted living center near Edmonds-Woodway High School. With all that, he offers a positive attitude and said it could be worse – he’s not diabetic, and his blood sugar and blood pressure are normal.
“I’m fairly healthy for a big, old fat guy.”
As you might imagine, a cruel tangent of Fowler’s disease is that it’s rendered him bed-ridden.
But he keeps up with the world on his tablet, and his hiking buddies frequently send him pictures from the trail. He revisits some of his favorite hikes with the help of Google Maps.
He was definitely an avid outdoorsman.
“There’s that,” he said, “and I used to like to go dancing on Friday nights, too. I’ve adjusted, I’m OK, but I’d still rather be up in the mountains on Saturday, hiking.”
Hope for his son, the filmmaker
Brandon Fowler was born at Stevens Hospital in Edmonds 38 years ago.
“He was my first,” Gary Fowler said. “My wife and I lived in downtown Edmonds in a little white house on Fourth and Dayton that isn’t there anymore. We divorced, and my wife got a transfer to Jacksonville (Florida), where Brandon and my two other grown kids ended up going to school.”
(A daughter, Arielle, has a mild form of MS while another son, Tyson, is in the clear, so far.)
Brandon is a filmmaker who, tired of the L.A. scene, moved to Latvia, a one-time Soviet republic on the Baltic Sea. He had visited there and just decided to stay.
He’s still working on a film called “Hybrid Vigor,” but its production has shut down since he’s too sick to continue.
“I have hope for my son,” Gary Fowler said. “It’s too late for me, but I’m hoping this can help him lead a normal life.”
To contribute to the Brandon Fowler fund, go to helphopelive.org/campaign/10598. You can also watch a video about Brandon’s struggles there. To watch a “60 Minutes Australia” episode about a patient treated at the clinic in Russia, go to https://youtu.be/SRtgFdKmfdo.