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Remember Baby Sharon? 

Fund established in wake of health care tragedy struggles.

Three years ago, the plight of "Baby Sharon" Emmel, an infant with a serious heart defect born in Vietnam to an Arkansas man and his wife, was followed on virtually a daily basis in the press as the drama of her medical needs unfolded. Her grandparents, Richard and Sharon Emmel, worked desperately to raise and borrow the money to get the baby flown to a hospital that could operate on her constricted aorta. Eventually, she got to Thailand, but, at 9 weeks old, she died of complications there. Hence, the Baby Sharon check-off on the Arkansas income tax form was born. The grandparents, who worked with state Rep. Jeremy Hutchinson, to establish the fund, hoped it would raise $1 million in its first year, 2003, from taxpayers diverting a portion of refunds to the worthy cause. "I thought that would be easy," Emmel said. Instead, the Baby Sharon fund has a mere $4,250 in its account, the sum of contributions from 420 of the state's estimated 1.6 million taxpayers. Disheartened, Richard and Sharon Emmel blame the low amount on lack of public awareness of the fund, knowledge they'd hoped Arkansas Children's Hospital and the state would generate. The legislation creating the fund, which became law Aug. 1, 2003, put Children's Hospital in charge of promulgating rules and regulations for the fund and required it to provide staff and office space. It also said the fund would be used "exclusively by Children's Hospital" to award grants to help pay medical expenses of families of children with catastrophic illness or injury. But Dr. Jonathan Bates, Children's CEO, said the hospital's lawyers believe the legislation - which he said Children's was not aware of until it had become law - has constitutional problems. Independent and outside counsel has advised the hospital that, because it is not a state agency, it can't promulgate rules or decide how tax money should be spent. Even if the state decided to disburse the money in the fund to Children's, Bates said, the conflict of interest in Children's deciding on how to spend dollars that could eventually come back to the hospital would be too great. Nor can Children's work to raise awareness of the fund. As a 501 c (3), Bates said, it must confine its fund-raising efforts to itself. Children's lawyers are working to draft legislation for the next General Assembly that would remove any legal flaws and put the fund's administration into the hands of the Department of Finance and Administration. Bates said he "feels bad" that the fund's startup has been slow. He called it a "good, well-intentioned" idea. Emmel acknowledged he "listened with a deaf ear" to the concerns of DFA employees who warned him the check-off would not raise the kind of money he hoped. But, he added, "I truly believe that if the people of Arkansas know" about the Baby Sharon fund, they will contribute to it and it will be a success. There are five check-off funds now and none pulls in big money. Check-offs for an state Olympic Committee fund, disaster relief and the schools for the blind and deaf raised $7,003, $33,187 and $31,891, respectively, in 2003. An organ donor check-off, new this year like the Baby Sharon Fund, has so far raised $2,701. Emmel has written Hutchinson asking that any new draft include provisions for publicity. Equally low-profile, Emmel said, is his website, www.arkansas-cares.org, which offers links to information about hundreds of serious childhood illnesses. He put hundreds of hours of work into the website, and got help from students at the University of Arkansas at Little Rock and Aristotle, the web design firm, to launch the site. The website notes that Datafix Inc. of Little Rock will repair donated laptops for parents of sick children who don't want to leave their bedside to research the illness or simply communicate with family. Emmel would like to see it get some support, also, "or it will be dead in the water."
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