Page 12 - South Mississippi Living - April, 2021

COAST NOTE
Finding a Cure
story by Lori Beth Susman photo courtesy of Amber Olsen
A rare disease is one that is not found in large numbers of people. A man who leaves his occupation in the corporate sector to become a physician to help better understand and learn more about his son’s health challenges is also rare. That is the story of Dr. Marcus Lee, a pediatric neurologist in Biloxi serving as chair of this year’s Zebra Run for Rare Disease.
The fourth annual 5K and one mile fun run will be held Saturday, April 17, at Ft. Maurepas Park
in Ocean Springs to bene t the United MSD Foundation, a foundation dedicated to curing a rare disease known as Multiple Sulfatase De ciency (MSD).
Lee’s son, Manning, born in 1997, was an infant when he started having seizures. Lee and his wife Angie looked for answers for their son who also was not reaching developmental milestones. It was
born with a mutation in the CDKL5 gene, a rare condition that is often lethal in males. Manning passed away with his parents at his side in December 2020.
In 2016, Dr. Lee met 2-year-old Willow Cannan, who was not hitting her developmental milestones. After testing, it was determined Willow, the daughter of Amber Olsen and Thomas Cannan of Ocean Springs, had MSD.
“I didn’t see Amber for several months,” said Lee. “By then, she had taken Willow’s diagnosis and run with it. She had established the United MSD Foundation, went to a planning conference in the U.K., and started fundraising to support MSD research.”
One of those fundraising e orts is the Zebra Run. “Dr. Lee found Willow’s ‘Zebra,’” Olsen said. “He diagnosed Willow with Multiple Sulfatase De ciency. He is an amazing doctor that goes the extra mile. He went into medicine because of his son and he knows rare disease and prognosis better than most. To have his support, and to be able to tell his and Manning’s story this year makes it extra meaningful.”
Olsen added that rare patients are not rare. “Together they represent 30 million people, ve million children like Willow will not live to 10 years of age. This run brings awareness to rare disease. We can cure many of the diseases together with everyone’s help. Even though this year has been terribly hard on everyone, many people are more aware of medicine and research than ever. Now is the time, the science is here.”
For more information on this year’s Zebra Run, visit curemsd.org/zebrarun.
the lack of information during the early year’s of Manning’s
life that led Lee to quit his job as an actuary with an insurance company and
obtain a medical degree. “Part of the reason I decided to go to medical
school was to nd out what was wrong
with our son,” Lee said.
Ultimately, it had been determined that Manning was
Willow Cannan and Dr. Marcus Lee
12 | April 2021
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