A Huntsville child is in need of community support to raise funds for medical treatment, and a local bar and grill is helping to raise money to provide treatment for her illness.
Alisha Ferguson is an eight-year-old girl diagnosed with muscular adenosine monophosphate deaminase deficiency, a rare muscular disease that effects muscle enzymes. Because of the high costs of medical expenses, members of the Huntsville community have formed the Medical Fund Benefit for Alisha Ferguson, and will hold a fundraiser at Murski’s Ice House on Oct. 18 beginning at 11 a.m.
The disease, which currently has only been reported in 200 cases worldwide, causes severe muscular pain and overactive kidneys and sometimes hospitalizes Alisha for up to weeks. The only treatment is to be hydrated intravenously with Lasix, a drug that reduces water in the body and potassium.
Sharon Rose is co-founder of the fund, and said there is no cure for the disease.
“The disease is in her body the entire time,” Rose said. “Using Lasix through IV is the only treatment.”
Alisha recently had heart surgery, and along with the normal costs of hospitalization, the family is looking for help paying for medical bills. Her parents, Marylou and Clayton Jax provide some medical insurance through Clayton’s company, but Rose said it is not enough to pay for all the bills.
“We’re trying to raise money now so that when she graduates, she have enough money to pay for medical expenses,” Rose said.
Rose said medical bills will be a lifelong issue for Alisha, and that there is no way of telling what her needs will be once she is an adult. She added that because of the seriousness of her illness, it is unlikely she will receive medical insurance later in life.
“No one in this country has lived long enough to find out what the long term effects of the disease will be,” Rose said.
Despite the stigma of the disease, Rose said Alisha remains courageous and active and is a typical young girl.
“She is a very happy child,” she said. ” She accepts what goes on with her. She’s had enough spells and trips to the hospital that she’s very brave. She doesn’t dwell on her disease. In every other aspect she’s a normal eight-year-old little girl with restrictive activities. She makes good grades, and if she can’t do something she doesn’t whine about it, she just does something else.”
She added that while Alisha’s activities are restricted in some areas, she still enjoys many interests normal for a girl her age.
“She loves arts and crafts,” Rose said. “Tea parties are her favorite things. She can’t do any sports, because hurting her body will throw the disease out of remission and the worse she’s injured the worse the disease acts.”
“She goes to school and has her friends,” Rose said. “She loves fishing and goes out with her dad, because he’s a big fisher.”
Rose said Murski’s was chosen to host the fundraiser because of its size and the outdoor atmosphere.
“The facility is big enough to handle the crowd, and we wanted people who drive by and haven’t heard about it to stop in,” she said. “It’s large enough to hold all the events we have scheduled.
Kerry Murray, the owner of Murski’s, said Alisha and her family are “good people.”
“The mother of Alisha Ferguson is a regular customer of mine,” Murray said. “Her daughter is often at the hospital, and it just seemed like the right thing to do.”
Murray speculated that there would be several hundred people attending throughout the day.
‘We hope to raise a whole lot of money,” he said. “We want to get a lot of people, especially the college aged kids.”
Murski’s has held similar fundraisers in the past including one for a college student suffering from leukemia. Murray said any money the organization raises on bar-be-que sales and other products or events at Murski’s that is not related to alcohol is theirs to keep.
During the course of the day, there will be silent auctions, a live auction at 5 p.m., raffles and a cake walk along with live music provided by Mica Sims and Mixed Review. Bar-be-que plates sell for $6.50 and will be delivered by Sigma Nu fraternity members to those who can’t attend.
Frank Weissmann, house manager for Sigma Nu, said he learned about the fund while getting a haircut from Alisha’s mother Marylou.
“We do community service events every chance we get,” Weissmann said. “I just hope this will help the family as much as they need.”
Rose expressed her gratitude for the efforts the community has made to help the fundraiser.
“I just want to say that we have an overwhelming support from the community not only in donating items, but in food items from stores also being donated for auction and raffles,” Rose said. “And the businesses that have placed orders that Sigma Nu will be delivering.”
Rose said that the organization hopes to make the fund benefit an annual event, and other fundraisers may appear in the future as well. She said that Waterwood Resort Country Club is considering sponsoring a golf tournament for the fund at a later date.
She added that the money raised by the funds will go towards helping a needy and wonderful child.
“If you come over to the benefit and meet her, you’ll understand why we’re doing what we’re doing for her,” Rose said.
Donations for the fund can be made to the First National Bank of Huntsville, under the Alisha Ferguson Medical Fund.