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Jefferson family turns child’s rare illness into a learning opportunity

POSTED: April 26, 2011 1:30 a.m.
Photos by LeAnne Akin/Times regional staff

James "Jimbo" Elrod and his wife, Marisa, are promoting an awareness and fundraising event for the Williams Syndrome Association through which they are connecting with families of other children with the rare genetic disorder.

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Avery Elrod is a petite little blue-eyed girl with an infectious smile who loves to dress up and see the reflection in the mirror.

She is also an inspiration for her parents.

Since Avery is the first child of Marisa and James "Jimbo" Elrod, Marisa didn't have a point of reference to know that her pregnancy was a signal: The baby she was carrying didn't move a lot. Compared to other babies, Avery was beautiful, but she wasn't very active and she wasn't growing or thriving, so the search was on to determine why.

After genetic testing, the Elrods got confirmation of a diagnosis: Williams Syndrome, a genetic condition that only affects one in 10,000 people worldwide - an estimated 20,000 to 30,000 people in the United States.

Avery's development was delayed; she didn't begin crawling until just after her first birthday - walking came after her second birthday.

Avery's doctor says most Williams Syndrome babies are late in developing their verbal skills but once they learn to talk, they are unstoppable. She is expected to develop exceptional verbal skills to match her win-you-over smile.

Since birthdays have been developmental milestones for their daughter, the Elrods are hopeful Avery will begin to talk soon after she celebrates her third birthday on May 5 with a fairy princess party.

Her birthday will also be marked by another celebration: The Race for Williams Syndrome fundraiser.

A May 1 Race for Williams Syndrome event at Crow's Lake in Jefferson has been organized by the Elrods. The event will include a 1-mile family fun walk beginning at 2:30 p.m. and 5K trail run beginning at 3 p.m. Inflatables and a dunking booth will add to the afternoon of fun and fundraising.

"We've got wonderful friends and family and our church family at Bethany Methodist Church, where Jimbo grew up," said Marisa, who noted their support as well as that of other friends, co-workers, enthusiastic runners and complete strangers who are making the plans for a successful first-time local fundraiser for the Williams Syndrome Association come together.

The Elrods count themselves fortunate that their first-born child does not have the cardiac conditions that affect many with Williams Syndrome. Most require heart surgery and battle other health issues.

Just days after receiving the diagnosis for their then 20-month-old, the Elrods had turned their focus to Avery's grandmother, Jan, who was seriously injured in a head-on automobile accident. So it wasn't until six months later that Marisa said reality hit home after she and Jimbo researched Williams Syndrome in books and online.

"As a mom, I realized we had a special-needs child, and we felt the rug pulled out from under us," said Marisa. "Would she ever be able to drive? Will she be able to live independently? Would her daddy be able to walk her down the aisle." Jimbo said he wondered if he should begin saving for her college. There were so many questions.

Since many of the answers lie in action, not inaction, Marisa set out to make life beautiful for Avery.

Avery, like most Williams Syndrome children, loves music and always prefers country videos over cartoons. Her harmonica and flute provide musical entertainment, but also serve as good exercise of her facial muscles and tongue. The therapeutic impact of that play should help aid in her speaking and feeding, a major issue at present since Avery needs to gain weight. Pediasure helps as the menu selection is somewhat limited.

Avery has a tiny upright piano she got for her second birthday and a set of drums she received last Christmas also mean music and work on coordination and motor skills. Grandparents, other family members and friends generously select gifts to foster Avery's development and she has toys galore in her colorful playroom.

Occupational therapy, which was already under way before the formal diagnosis of Williams Syndrome, continues to build strength and coordination. When a small trampoline was incorporated into Avery's therapy, it wasn't long before a trampoline was in place in the family room.

Avery's world is also filled with a love of school, her classmates and all people. When she arrives, she hugs each classmate with a hello greeting. She also doesn't meet a stranger in the grocery store or if they go out for dinner. She enjoys meeting people.

"After my husband and I went through the grieving process and thinking there was nobody around us with this same rare disorder, we pulled our emotions together and decided to learn more about it and spread awareness within our community," said Marisa. "It was the least we could do for our daughter."

They are also committing themselves to helping others with Williams Syndrome.

Employed with the Hall County Fire Service, Jimbo said he has always been busy studying to get that college degree, that firefighting degree, that next promotion. After successfully passing the lieutenant's exam, Jimbo said he wondered what he would do with his spare time. He soon found out.

Since Marisa works in Athens, Jimbo has been busy promoting the May 1 event and seeking sponsorships in and around Jefferson. He's been promoted to co-coordinator of the event.

The couple have joined the Williams Syndrome Association, a comprehensive resource for people and families living with Williams Syndrome as well as doctors, researchers and educators. Through WSA, the Elrods learned there are eight other families coping with Williams Syndrome within a half-hour drive of Jefferson.

"It warms my heart to see the other children as they realize they are not the only one," said Marisa. Building friendships is part of the inspiration for the event.

"Life has definitely taken us on a different journey than we originally expected when Avery was born," said Marisa. "I truly believe that the Lord gave us and our family this sunshine for a reason. I must admit even through the hard times of watching her struggle to grasp fine motor skills and praying that she will gain half a pound before the next doctor's appointment, I wouldn't trade her happiness and smile for nothing in this world.

"She is happier than most and touches the hearts of people around her. For the people that meet Avery ... she always leaves you with a smile," said her proud mom.

 

 



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