Hugo family of 2nd-grader with rare disease needs a hand
HUGO – If you were to walk along the sidewalk in Hugo’s Victor Gardens neighborhood, there’s a good chance you might spot 7-year-old Emily Elletson riding her bike in the street with her family.
You wouldn’t know from looking at her that she was anything but a completely healthy young girl.
You certainly wouldn’t guess that she’s one of maybe 30 people worldwide who suffers from a rare medical condition called LCHAD. For medical types, that abbreviation lengthens out to long-chain 3-hydroxyacyl-CoA dehydrogenase deficiency.
Essentially, Emily’s body lacks the ability to metabolize fat. Not only can this lead to dangerous fat deposits building up in her body, but since she can’t use fat as a source of energy, her body turns instead to breaking down muscle when her energy levels run low.
The state of Minnesota started screening for LCHAD in infants just two months before Emily was born, and this is how her family was made aware of her condition. In this sense, Emily was lucky; some scientists are suggesting that the disorder, which was only identified in 1989, may be one of the causes of Sudden Infant Death Syndrome.
The best way to combat LCHAD is a carefully controlled diet and eating schedule. Emily’s diet includes a variety of very low-fat foods, and in order to make sure she has the energy she needs, she eats about every three hours, even if it’s just a small snack.
“You can see it in her face when she’s exhausted,” said Emily’s mother, Amy Wigren. Exhaustion for Emily doesn’t just indicate tiredness; it’s a warning sign that her muscles may be deteriorating, and that she needs to eat soon.
Even with such careful monitoring of her diet, the condition is a little different every day, making it difficult to manage. Any activity that burns her fragile supply of energy can be dangerous. As Amy describes it, “What she can do one day, another day might hurt her.”
If Emily runs out of energy, her blood sugar can plummet dangerously quickly, and she often requires hospitalization to stabilize. Some months pass by with few incidents, but in the last six months, she’s visited the hospital nearly a dozen times.
In spite of everything, Emily stays remarkably upbeat about her condition. The little girl and her family make every effort to live life to the fullest.
This summer, Emily has spent a lot of time at the community pool at Victor Gardens, even taking to diving off the high dive. Amy proudly describes her daughter as a “very, very good swimmer.”
The Oneka Elementary second-grader was also cast as a Chihuahua in Lakeshore Players’ summer production of “101 Dalmations.”
In addition to an active summer here in Minnesota, Emily and her family attended an LCHAD conference in Portland this past July. Emily was able to meet four other children with her condition, giving her a valuable sense of community considering how rare the disorder is.
A fundraiser to help defer some medical expenses for Emily and her family will be held at the Hugo American Legion, 5383 140th Street N., starting at 3 p.m. Saturday, Sept. 22. All are welcome to come enjoy a pig roast, carnival games, face painting, a bounce castle, and more.
Donations are still being accepted for a silent auction.
Tickets will be available at the door by cash or check only.
Details: Food, silent auction, games. Tickets at the door: $20 adults, $10 child, 2-and-under free. RSVP’s suggested but not required. To donate silent auction items, call 612-850-6390 or email firstname.lastname@example.org
More info: http://emilyelletsonsbenefit.yolasite.com/