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http://www.heraldargus.com/articles/2012/0...38092866463.txt

Benefit being held for local boy

By Brianne Eichman
Staff writer
1-866-362-2161 Ext. 13870
beichman@heraldargus.com
Published: Saturday, April 7, 2012 5:04 PM CDT
La PORTE — Kay Marcum, mother of Mason Boone, plans to hold a benefit to raise money for her child, who is dealing with Smith-Lemli-Opitz Syndrome.

The day after his birth, Mason was airlifted to Riley's Children's Hospital in Indianapolis, and after numerous tests the doctors discovered he had SLOS.

Marcum said SLOS is a variable genetic disorder that is characterized by slow growth before and after birth. She said often includes a small head, mild to moderate mental retardation and birth defects ranging from facial features, cleft palate, heart defects, extra toes and fingers and underdeveloped external genitals in males.

After undergoing several tests, it was also discovered that Mason had an extremely low cholesterol level.

"Most people think cholesterol is bad, but you have to have it to grow," said Marcum.

Mason was born on July 18, 2011, at five pounds and five ounces, and Marcum said after nearly five months, he only weighed 9 pounds.

"We have a special formula and a diet," said Marcum. "Once he gets bigger, he will have growth hormones and stimulates."

Mason has extra fingers and toes, and Marcum said they will have surgeries to fix them in the future.

"There is also a hole in his heart, and they are not sure how that will affect him later," said Marcum.

She added that the financial burden only increases as Mason gets older, and she would like the throw the benefit to help pay for the many trips, medications, surgeries, therapies and treatments.

"I want to make it good for him," she said. "They don't know what he will need in the future, and I just want to make sure we have something to fall back on."

A fundraiser and softball tournament for Mason will be held today.

The event will be held at the Kingsford Heights Community Building, 515 Wayland Road, Kingsford Heights.

The event includes food and non-alcoholic beverages, a DJ, 50/50 drawings, silent auctions and a meet and greet with Mason.

There is a $5 cover and $10 per player in the softball tournament.

To donate raffle items or for more information, call Kay Marcum at (574) 360-8960, or visit masoncaseslos@groups.facebook.com.