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Members of the Kingston and Harriman Lions clubs, together with support from officers of District 12N of Lions Clubs International, are working together to offer support to a Rockwood girl fighting against a rare disease to maintain her eyesight.
Emilie Gregg, 6, has been diagnosed with hypoplasminogenemia, an incurable blood disease.
“There are only five documented cases of this disease,” said Martin Skinner of the Kingston Lions Club. “The disease attacks all organs of the body, but her eyes have been a primary area of the problem, as membranes form over the eye greatly affecting her vision.”
Skinner said Emilie has had 11 surgeries to remove the membranes and frequently has to change eyeglasses.
A medication is available to keep the membranes melted away, “but the cost is $2,600 per month,” Skinner explained.
“She needs many other medicines in addition for other problems brought about by the disease,” he added. “Financial assistance is not available from normal sources, as the medicines are considered experimental.”
Facilities such as St. Jude Children’s Research Hospital and East Tennessee Children’s Hospital, will not assist for the same reason, he added.
The problem was brought to the attention of the Kingston Lions Club several months ago. The organization has an account for emergency eye care, and the members voted to expend that money to provide Emilie with financial assistance.
The Harriman Lions Club was informed of the effort, and it, too, chose to help financially.
The problem was then made known to the 12N district governor of District 12N, which oversees upper East Tennessee for Lions Clubs International.
He authorized matching funds from his discretionary fund, and encouraged other Lions Clubs in the district to help.
“It is recognized that these financial contributions probably will not cure the problem; however, it will give the family some help in managing the medical costs,” Skinner said. “The longer her sight can be maintained, the greater the chance of finding a cure.”
Skinner and other Lions Club members invite others to assist in this cause.
Anyone wishing to assist can send money to Bank of America, 616 N. Kentucky St., Kingston, TN 37763, and identify it to go into Emilie’s medical account.