Farm stand exchange

While summer is typically a season filled with fun-in-the-sun days, for those with erythropoietic protoporphyria (EPP), typical day activities like bike riding, going to the beach, and playing outdoor sports cannot be enjoyed.

EPP is a rare genetic disorder caused by the deficiency of the enzyme ferrochelatase, which is essential for the production of hemoglobin. As a result of the lack of this enzyme, there is an abnormal accumulation of protoporphyrin in the bone marrow, plasma, and red blood cells.

The major symptom of EPP is severe pain after exposure to sunlight, while some with EPP can even be sensitive to certain artificial light. Symptoms may start with tingling, itching, or burning of the exposed skin.

These phototoxic reactions are generally not responsive to pain medications and antihistamines and are usually treated with fans, cold washcloths, and hot showers.

EPP patients are advised to avoid sunlight and wear sun-protective clothing, such as long sleeves, hats and gloves.

Soon-to-be 12-year-old Morgan McKillop was diagnosed with EPP at the age of 2 and half, after going to a pediatric dermatologist when general practitioners and allergists failed to diagnose her issues, which resulted in severe swelling and an unsettling puffiness in her face and body.

“She looked like a Cabbage Patch Kid, with puffy skin and sunken eyes,” said mother, Colleen McKillop.

The early diagnosis did help in that Morgan was able to grow up already accommodating her special needs as someone with EPP. Morgan’s parents guided her towards indoor sports like volleyball, basketball and gymnastics, where she excelled.

Most recently, Morgan attended a specialized sleepaway camp called Camp Sundown, where other children afflicted with porphyria diseases are able to enjoy the summer experience, with an indoor pool and an adjusted schedule that seeks to invert the standard day with midnight swims and waking up at noon to maximize the time without the full sun.

The McKillop family has found solace and support with the American Porphyria Foundation (APF), and this summer, wanted to give back to the organization. Typically, they host a “Morgan Fun Run from the Sun” event, but due to the pandemic, were unable to do so this year and last year. The event, which was hosted at the Bayport-Blue Point High School track in 2019, had races and raffles that culminated into a $3,000 donation to the APF.

This year, with an active and bountiful vegetable farm on their property, the McKillops, who often give away their produce, decided to take in donations to APF in exchange for some of the vegetables, which include cucumbers, cherry and grape tomatoes, green peppers, string beans, carrots and snacking peppers.

Morgan and her father, Ben, have grown closer by tending to their mini farm as they cultivate and care for their crops in the early evening, when the sun is at a lower intensity and more bearable for Morgan.

On the first day of the exchange, the McKillops raised nearly $600 and hope to hold two more events this summer. To make a donation to the APF, please visit www.porphyriafoundation.org.