Pancakes for Ethan
Secretary Treasurer Winchester Lions
Each year the Winchester Lions hosts a fundraising pancake breakfast to support various causes. This year, we have undertaken to sponsor Ethan Cook’s Vision Loss Treatments.
The Winchester Lions Club to host their Annual Pancake Breakfast at the Winchester Lions Hall, 515 Albert St. from 8 a.m. to 11 a.m., Saturday, April 20.
Ethan is a 15-years-old North Dundas youth who in October of 2017 started experiencing vision loss in one eye where his central vision became blurry. By December of that year, he was legally blind in both eyes. He has some remaining peripheral vision but experiences colour blindness in what remains, he has no central vision remaining and describes it like looking into the most extensive fog that may be imagined. In April 2018, he underwent testing to determine if he had Leber Hereditary Optic Neuropathy (LHON) which is a very rare disease related to mitochondrial DNA which causes the death of cells in the Optic Nerve.
There is not much known about the disease, but some reports indicate that LHON affected people in the USA range from 6,452 to 10,406 (LHON GLOBAL Statistics), considering the population of the USA that makes it a very rare disease and is commonly misdiagnosed as Multiple Sclerosis (MS).
The rareness of the disease made diagnosis for Ethan a significant challenge and during this journey, Ethan suffered through a variety of treatments that could not help him as the doctors ruled out more common illnesses. While waiting for his testing to be completed, Ethan and his Mom, Jennifer, created a gofundme page to raise funds for vision devices to help him at school and home. He surpassed his initial goal and was able to purchase many state of the art vision aides that he uses daily in school and home.
The Winchester Lions, as “Knights of the Blind” and learning of Ethan’s challenges, started fund raising to provide future care and support to Ethan. In 2018, Ethan was formerly diagnosed with LHON and in late 2018, he was invited to participate in an experimental drug trial of the Drug Idebenone produced by Santhera Pharmaceuticals (Switzerland) at Mount Sinai Hospital in New York City. This drug is not currently approved for LHON treatment in North America but is in Europe. Santhera will cover many of the costs for Ethan but not for his escort (Mother or Father). Despite his challenges, Ethan earned very impressive scholastic achievements in North Dundas District High School and continues to do very well in class and show great potential.
In 1925 at an address to Lions Clubs International in Cedar Point Ohio, Helen Keller asked those present to “try to imagine how you would feel if you lost your sight tomorrow. Picture yourself stumbling and groping at noonday as in the night, your work, your independence gone! In that dark hour wouldn’t your heart cry out for a friend to teach you how to live in the dark?”, she also appealed to those by saying “I appeal to you, Lions—you who have your sight, your hearing, you who are strong and brave and kind—will you not constitute yourselves Knights of the Blind in my crusade against darkness?”
Since then, vision care and aid to the blind have been one of Lions International most honoured duties. One long standing tradition of the Winchester Lions is the hosting of a fundraising breakfast annually on “Easter” Saturday. This year the Lions have decided to dedicate the funds raised during this breakfast to Ethan’s Cook Treatments. This money, combined with the approximately $16,000 donated by various Lions Clubs within Eastern Ontario, will cover much of the costs associated with Ethan’s Treatment and allow for the Winchester Lions to help provide continuing support to Ethan and his family in the future. The Winchester Lions was established in 1968 and continue to serve Winchester and the community since then.
A list of sponsors will be available at the Breakfast, but initial sponsors include, Greg’s Quality Meats, Denzil Raistrick is providing the Maple Syrup.
Ethan Cook and his family will be in attendance.