Dying child approved for new treatment testing

Two days before Christmas, Hallsville mother Sarah Pruitt got the phone call shed been waiting for.

After wrestling with Medicaid for what seemed like an eternity, the health care provider approved the paperwork to pay for testing for a new treatment at Duke University for 2-year-old Aurelia Onley, Pruitts daughter, who is dying from a rare, genetic disease.

God has blessed our family today Pruitt wrote on her daughters Facebook page Dec. 23. We finally got the approval from Medicaid and we are heading to Duke on Friday. God is going to give us a miracle. We will have a week of testing to see if they will except Aurelia into this treatment. We need prays for Aurelia now more then ever.

Aurelias diagnosis was confirmed last month to be metachromatic leukodystrophy, an inherited disorder characterized by the accumulation of fats, called sulfatides, in cells, according to the Genetics Home Reference, a National Library of Medicine project.

This accumulation affects cells in the nervous system that produce myelin. Sulfatide accumulation in myelin-producing cells causes progressive destruction of the nervous system, including cells that detect sensations such as touch, pain, heat and sound.

Without treatment, and a cure that doesnt exist, Aurelia will progressively lose the ability to walk and will develop loss of sensation in the extremities, incontinence, seizures, paralysis, an inability to speak, blindness and hearing loss.

Children diagnosed with the late infantile form of MLD, such as Aurelia, typically do not survive past childhood.

At Duke University, a new program could prolong Aurelias life. The family arrived in North Carolina at the Ronald McDonald House on Dec. 27 and on Dec. 29, started the series of tests that will determine if the childs brain is strong enough to withstand treatment.

Should Aurelia be approved for the treatment which includes cell replacement therapy, bone marrow and stem cell transplants using umbilical, fetal and cord blood cells and enzyme replacement therapy then this past week is just the beginning of a monthslong process to help the little girl survive past childhood.

They think this will, I dont want to say cure her, but stop her brain from dying because thats what happens with all the children they get, Pruitt said previously. The child has to be strong enough; their brain has to be able to repair.

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Dying child approved for new treatment testing