Morgan's Fun Run From the Sun (Second Annual)
Wednesday, April 29, 2020
Morgan McKillop is a typical 10-year-old girl. She loves to dance, sing, act, play sports, and hang out with friends. She can do all these things but is limited to the indoors and shady areas, so she is not exposed to sunlight (direct or reflected). This is because Morgan has a condition known as EPP, or Erythropoietic Protoporphyria. EPP is a blood disorder in which Morgan's body misses a step in the process of making heme. This missed step causes severe phototoxicity. When sunlight hits Morgan’s skin, it causes a chemical reaction that creates extreme pain that is not visible to the eye. She describes it as feeling "like someone is pouring hot lava on my skin." Morgan was a just one and half years old when her parents realized something was wrong. Within a year (which is quick for rare diseases!), they had a diagnosis. After several years of trying to figure out how to manage Morgan's sunlight exposure, they finally met "their people" at a place called Camp Sundown. This camp offers a week of sun-free fun with other children who suffer from similar diseases and other families who are trying to cope with living with a rare disease. From there, they became familiar with an organization called the . The APF, along with the porphyria experts at Mt. Sinai Hospital in NYC, have been invaluable resources for managing Morgan's condition. The APF has served as advocates for children and adults alike in the fight for finding a real solution to the problems that arise from all types of porphyria. Morgan's family would like to thank the APF for all that they do for people impacted by Porphyria. On Wednesday, April 29, 2020, the McKillops will host "Morgan's Fun Run From the Sun," in Morgan's honor, to help raise funds for the APF to help continue the fight to find a cure for EPP. Last year, the Bayport Blue Point community came together, along with many other families and friends, for an evening of friendly races on the track at the high school. Prizes were given to every participant, and top finishers got medals too. A few raffles topped off a great inaugural event. They are very much looking forward to hosting their second annual event this year!