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Benton girl with rare skin condition to be subject of Family Fun Night

June 6, 2013

Anne Marie

The Spreading Anne's Wings organization will host the "I SAW Hope" Family Fun Night on Saturday at War Memorial Stadium.
The event, which will benefit the family of a young girl with a rare skin condition, is set from 6:30 to 8:30 p.m.
Activities will include face painting, bounce houses and presentations by Radio Disney. Tickets are $5 for children and $7 for adults.
Following the event will be a free showing on the jumbo-tron of a popular children's animated feature.
The event is being held to raise money for a swimming pool for a local family who needs it for a child with a rare skin condition, Clifton said. However, the Family Fun Night is meant to raise awareness and provide an event for all special needs children and their families.
The family's daughter, 8-year-old Anne Marie, suffers from a skin condition known as epidermolysis bullosa.
EB is a group of several skin disorders that share a prominent manifestation of extremely fragile skin that blisters and tears easily from any friction or trauma, Clifton said.
The children who suffer from this are called "the butterfly children" because their skin is as said to be as fragile as a butterfly's wings, Clifton added.
Anne Marie is covered with blisters and scabs and has already exceeded the life expectancy physicians gave to her parents.
Internal organs also are affected by the condition, for which there currently is no cure nor treatment.
Life for Anne Marie is difficult, Clifton said. Her family must ensure that she receives daily wound care in order to prevent infection.
This includes daily puncturing of blisters, scrubbing of her skin and then a bath soak in bleach water, Clifton said.
A swimming pool would be beneficial to Anne Marie's treatment, she added.
Also, the family, which has six children, is often separated because Anne Marie cannot participate in various activities or visit pools where the chemicals cannot be regulated to prevent infection.
A swimming pool at the home will keep the family from being separated, Clifton said.
A partnership with Youcaring.com has been formed for the endeavor. So far, $958 has been raised toward the organization's goal to raise $10,000.
Event bracelets and T-shirts are available. More information is available at the event's Facebook page: www.facebook.com/SpreadingAnnesWingsISawHope.

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