The first Sunday of May, for the past 8 years, has been dedicated to a local cause. Keyes Pancake House on Main Street in Old Forge has generously donated their facility and resources to raising research funds for Smith-Lemli-Opitz Syndrome since 2003.

This year on Sunday; May 1, 2011 Keyes once again hosted the Annual SLO Charity Pancake Breakfast to honor Morgan Gardner.

Morgan is the nine-year-old granddaughter of John and Kathy Gardner of Old Forge and the daughter of John Jr. and Michelle Gardner of Rochester, NY.

All proceeds generated on the day of the breakfast are donated to the RSH/SLO Foundation.

The foundation supports and seeks out researchers to investigate further treatments and ultimately a cure for SLOS.

Smith-Lemli-Opitz Syndrome is a rare and incurable metabolic genetic condition that affects both mental and physical development. Only 20% of children with SLOS survive birth.

Currently, the only treatment is a synthetic form of cholesterol and/or eating raw pasteurized eggs. Life with SLOS involves a team of doctors, specialist and therapist to manage the physical malformations and developmental delays. To date there is not a recorded adult living independently with SLOS.

Morgan’s family conveys deep gratitude to the Old Forge/Inlet community for their monetary support, generosity and continued prayers for Morgan’s well being.

Research today is progressing. Investigations into preserving eye sight and avoiding Glaucoma and Cataracts (common ailments for SLOS) are currently being lead by a team of researchers.

The SLOS Foundation has aided vital mice model research with funding that will hopefully provide more understanding into the genetic malformations of the syndrome and therefore leading research closer to unveiling a cure.

Research is very expensive; with the current economic situation larger institutions are granted limited funds.

Fundraisers, such as the pancake breakfast, are exceptionally vital to continuing research.

Morgan is doing well. She rides horses as part of her therapies.

Morgan attends a third grade regular education classroom with the support of special educational interventions.

She recently was fitted for glasses and concerns for her eyesight have been raised.

Morgan’s life is not without struggle; she must continue visits to Boston Children’s Hospital for blood work and monitoring of her syndrome, multiple specialist appointments throughout the year, and therapies.

School is becoming increasingly difficult for Morgan; the curriculum demands coupled with her developmental delays make learning challenging.

This past winter Morgan was very ill with pneumonia and was hospitalized.

Fighting the common cold can be very serious for children with SLOS and often presents serious life threatening complications. Morgan never complains. She is a “true trooper” plunging forward and persevering through all of her challenges. Morgan is pure hearted and very good-natured.

Thank you does not seem to be enough for a community that gives each year.

The breakfast is not without the generosity of the local businesses that donate prizes, the volunteers who give of their time and the patrons who show up to eat pancakes for a great cause.

Morgan’s family dreams of a cure for Morgan and the other affected children, until that miracle comes they will continue to fundraise and fight for Morgan’s battle with SLOS having the strength of the community behind them.

Thank you, for caring and holding Morgan in your thoughts and prayers.

We are humbled by the continued support of the local community and all those that routinely ask about Morgan, one day we hope to share that she was cured and it was because of the generosity of Old Forge/Inlet residents.

—The Gardner Family

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The Gardner family is grateful to the following businesses for their generosity and support with the food and raffle prizes:

Ace Hardware, Adirondack Bank, Adirondack Express, Adirondack Pizzeria, Byrne Dairy, DiOrio’s IGA, Don’s Polaris, Community Bank, N.A., John Briant-Chalet Publishing, Rivett’s Marina, Keyes Pancake House, 5 Corner’s Cafe, Kinney Drugs, Knotty Pine, Enchanted Forest Water Safari, Brooker’s True Value, George’s Gifts, Florist & Liquor Store, Holly Woodworking, Mountain Greenery, Maine‘s Paper and Food, Mountainman Outdoor Supply Company, Palmers Foods, Old Forge Fire Department, Old Forge Glass and Car Wash, Old Mill Restaurant, Randy’s Restaurant, Strand Theatre, Souvenir Village, Subway of Old Forge, Sysco, The Weekly Adirondack, Thendara Automotive, Old Forge Camping Resort, Old Forge Hardware, Wilderness Interior, Frankie’s Restaurant, Smith’s Marina, Ozzie’s, Lee Beckwith, McCauley Mountain, Jill Gibson, Chuck Mundry, Elements of Style Salon, Gallery, Billy’s Restaurant, Margo Richards, Adirondack Accent, Bird’s Adirondack Marina, Rich Nelson Construction, TOW Bar, in addition to monetary donations.

For more information about SLO, visit www.smithlemliopitz.org