Ana Maria’s recovery progress stalls
The little girl’s eating disorder is worse than ever and her family needs help.
BY STEPHANIE INGERSOLL
They came back from a Baltimore hospital tired but full of hope.
Emmy Bennett thought doctors had finally figured out why 2-year-old Ana Maria wasn’t eating. The family even had a plan to wean the girl from her backpack feeding tube and felt sure she would soon be able to eat enough calories to put on weight.
Nearly four months later, the Bennetts are more exhausted and worried than ever.
Ana Maria has lost weight since returning from her 8-week stay at the Kennedy Krieger Institute. Instead of shedding her backpack feeding tube, she now has to wear it every hour of the day. Doctors are even going to install another tube that will pump food directly into her small intestine in hopes of helping her.
And everyone is still baffled about the cause of her eating disorder.
“They just haven’t figured it out yet,” Bennett said.
The Bennetts have already spent more than $125,000 trying to help their daughter. More than $47,000 of that was donated by Lowcountry residents, businesses and clubs. An unnamed benefactor paid the balance.
But medical bills are still coming in, the Bennetts are out of money and now they’re trying to figure out how to pay for more treatment. With three other children and only one working parent, finances are tight.
And another baby is on the way. Emmy Bennett found out she was pregnant again just before taking her daughter to Kennedy Krieger in February.
She’s due in seven weeks.
“It was very shocking,” she said. “But all things happen for a reason.” They know the new baby will be a girl and they’ve asked that her umbilical cord blood be saved in hopes that her stem cells could help Ana Maria some day if her illness is diagnosed.
After the baby is born, Kennedy Krieger doctors want her to bring Ana Maria back to Baltimore for more tests. They know she has a food allergy, which severely limits the number of foods she may eat, but they don’t know why she is still not tolerating any food.
Her food seems to back up in her stomach, Emmy Bennett said. They put her on medicine to make the food move on, but it hasn’t worked.
Even milk pumped into her stomach is a problem. It leaks out around the tube and her stomach can’t hold much before causing the food to back up into the tube.
This week, doctors said she must have another tube inserted that will carry some of the food directly to her small intestine and some into her stomach. The family is waiting to hear back once a surgeon is selected.
They also have an appointment scheduled in August with a neurologist. In addition to her gut problems, Ana Maria is now also suffering from arm and leg pain and no one knows why.
The family has Medicaid but it won’t pay for out of state treatment and the family hasn’t been able to find any South Carolina doctors who can help their daughter. They tried to get an appointment with a Charleston specialist, but the earliest they can see him is December and Bennett is worried that’s too long to wait. Her daughter only weighs 24 pounds – two pounds less than in April.
They are trying to find funds to take Ana Maria back to Kennedy Krieger. With her daughter so sick lately and a baby on the way, she hasn’t been able to devote time to fundraising as she did last year.
“We don’t know what to do,” she said. “We’re at a loss. I’m overwhelmed, I’m burned out.” But she hasn’t given up hope.
“I want Ana to get better,” she said. “We’re going to have to raise money to go back up there, but how we’re going to do that at this point, I have no clue.”
Special to Bluffton Today
Ana Maria Bennett, 2 ½ , was able to see a speciaist in Baltimore with the help of Lowcountry residents, but she’s still in trouble and still needs your help.
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