Benefit To Help Family With Medical Costs

David and Sandra Smith are overwhelmed with daughter Sarah's medical expenses:
by Fran Maninno

The community is rallying around the family of three-year-old Sarah Jane Smith, daughter of David and Sandra Smith of Crestwood. Sarah, who has epilepsy, fell victim to a debilitating seizure on March 28 that left her with bi-lateral brain damage and other related health problems.

A trust fund has been set up to help the family cope with their overwhelming medical expenses, and a benefit is scheduled for Nov. 14.

[Above Picture] The Vietnam Veterans of America, Bevo Chapter 611, sponsored a benefit for Sarah Smith on Oct. 2. Pictured are (l to r): David Smith, Candace Bingham, Sandy Smith (holding Sarah), Dave and Doug Berg.

"Sarah had her first seizure in her fifth month of life," said David Smith, co-founder of SmithLee Productions in Maplewood. "Our little girl, from five months through 36 months of age, was ravaged by thousands of seizures of different varieties."

The seizure Sarah suffered in March was insidious, lasting nearly five hours.

"With all that Sarah had endured before, nothing could compare to this," said Smith.

Doctors at Cardinal Glennon gave Sarah only a 19 to 20 percent chance of survival, but she persevered. All in all, she would spend 112 days in the hospital.

Dr. Glen Fenton, a pediatric neurologist at Cardinal Glennon, treated Sarah's epilepsy for most of her young life. He defined it as a chronic seizure condition where the patient tends to have repeat, non-provoked seizures.

[Below Picture] Vietnam veteran Kenneth Unger presented Sarah Smith with his Purple Heart at the Oct. 2 benefit. The benefit was organized by Kirkwood resident Candace Bingham.

"There are a number of different kinds, and different degrees, of epilepsy," said Fenton. "Sarah has a long-standing history of difficult to control epilepsy. For most people, one medication controls it. For intractable epileptics, one medication, two, three medications still don't control it."

With traditional medicine offering promising, but limited results, David and Sandra Smith decided to seek additional treatment for Sarah at the Midwest Hyperbaric Institute in Chicago. According to the institute's Web site, hyperbaric oxygen therapy increases oxygen levels in areas of tissue damage or injury.

"We've researched this treatment extensively. There are no guarantees, and there may be some risks of lowering Sarah's threshold to seizures," said David Smith. "We have seen five best-case studies where the children are shown before weeks and months of treatment, and immediately after treatment. The results make a compelling argument to try the therapy."

Because hyperbaric therapy is not FDA approved, the Smiths are bearing the financial burden without help from their insurance company. Both Sandra and David Smith are self-employed; Sandra is an Emmy award-winning music composer, and works at SmithLee along with her husband. The costs of the hyperbaric therapy and of Sarah's long-term care, plus the added costs of time off from work, have been overwhelming.

"We're not looking for entitlements, but we are in a desperate situation," said David Smith.

For all they have been through, the Smith's haven't had to go it alone. Friends, neighbors, even total strangers have done whatever possible to share the burden - and the joy - of Sarah's care and rehabilitation.

Margaret Russell, an occupational therapist with the Special School District of St. Louis County (SSD), works closely with Sarah about two times a week.

"Right now, Sarah's making what would be little steps for most, but great gains for her," said Russell. "She's holding her head better, taking some weight on her arms - it makes you have all kinds of hope for her.

"Sarah is cortically blind," explained Russell. "Her eyes are intact, but the message isn't always getting to the brain. She's seeing better now. She will look to her mom and dad, make eye contact, and track things. As the brain regenerates a little, that will come back more and more."

Glendale resident Vicki Tiburzi came to know the Smith family through her friend, Mary Ann Barnes. Tiburzi is a developmental therapist by trade. She and Barnes volunteer to help with Sarah's care.

Sarah Smith at age 2.

"Mary Anne and I go over there once a week for three or four hours so Sandy can go out and do what she needs to do, like go to the grocery store," said Tiburzi "It is a very time consuming role Sandy has to play. It's 24 hours a day. She is just a wonderful person, always so upbeat and positive. They both are."

Russell, too, is in awe of Sarah's parents, and how they are coping day to day.

"They'll do anything for Sarah," she said. "It's so neat to be able to help Sarah do things that make them smile. They have been through so much."

Kirkwood resident Candace Bingham is heading up the Nov. 14 benefit. She met the Smith's through in-home daycare, where her daughter, Aleah, and Sarah would play together.

"Ever since I started this, people have thanked me for all the hard work," said Bingham. "I don't understand such statements, because Sarah is the one doing all the hard work. We are just throwing a big party. To work in Sarah's honor is an honor in itself."

Bingham helped organize a benefit barbecue held Oct. 2, sponsored by the Vietnam Veterans of America, Bevo Chapter 611. At the benefit, veteran Kenneth Unger presented Sarah with his Purple Heart.

"It was the kind of moment that takes your breath away," said Bingham. "It was an incredible gesture of support."

Webster-Kirkwood Times
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