Saturday, February 28, 2009

Rare seizure disorder takes toddler's life!

She lived for only 20 months, but a Phoenix woman hopes her daughter's memory will live on and help draw attention to a rare deadly disease.

ABC15 first started following the story of Teresa Villalpando back in May. The girl had just turned 1. Weeks before what would be her only birthday, she was diagnosed with Sandhoff disease.

The disease is a rare genetic disorder that deteriorates the nervous system. The disease kills its victims before the age of three. Teresa was one of only a very few documented cases of the disease in Arizona.

Teresa died Thursday. She lived four months longer than doctors expected.

Teresa started showing symptoms of the disease when she was just two months old and got worse from there. Her mother Liahla Roberts says many doctors didn't know anything about the disease and it wasn't diagnosed until months later.

"I didn't know what to do, my baby was not well and no one could tell me what was wrong." Roberts said. She documented Teresa’s life on her website. In the following excerpt she describes when she realized something was wrong.

“We had never seen this before – my baby turning blue, then purple. ‘Quick, watch the kids! Lets go to the hospital’. Weeks with no sleep soon turned into months. Hospital after hospital telling me it was just a cold and that she would get better soon. ‘Get some sleep,’ the doctors would tell me, until the right doctor listened and said, ‘We have to do something now.’"

Cat scans, MRIs, and a slew of tests followed as Teresa continued to get worse.

Roberts says over time Teresa would gain some skills and then lose them again.

Infants with Sandhoff lose motor skills such as turning over, sitting, and crawling. As the disease progresses, infants develop seizures, vision and hearing loss, mental retardation and paralysis.

"It's difficult as a mom to go through this," said Teresa's mother Liahla Roberts told ABC15 during one of her daughter's numerous hospital stays. "She is an angel. There is some reason she is here."

Since her daughter's diagnosis, Roberts has been fighting to draw more attention to the disease. The disease is a form of Tay-Sachs.

A specialist explains that in order for the disease to be passed on both parents must be carriers of the gene that causes it, and even in that circumstance it occurs about 25 percent of the time.

Roberts spent countless hours caring for her daughter at home despite having to care for her other five young children. She had to monitor the girl twenty-four hours a day, clearing her throat and nasal passages. As the disease progresses, the children even lose the ability to cough.

"I'm honored to be her mother," said Roberts.

Through various fundraisers like carwashes, and concerts, Roberts has managed to make a lot of connections with the community, helping people understand what the disease is through her daughter.

The money raised will go to Teresa's funeral expenses and to research for the disease. Roberts intends to continue to raise money for research in her daughter’s memory.

Viewing for Baby Teresa will be Thursday February 26th from 5pm to 8 pm, at Thompson’s Valley West at 926 Litchfield Road in Goodyear.

Funeral services are Friday February 27th at St. John Vianney Catholic Church at 539 E. La Pasada in Goodyear at 9 am.


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