Friday, August 15, 2008

Yay Lizzy. We are so proud of you, your mom, grandma and grandpa!!

Elizabeth is beating the odds

By Peg Reynolds, Staff Reporter
Published: Friday, August 15, 2008 1:28 PM CDT
E-mail this story | Print this page
Pontiac Fire Department will “Fill the Boot” again this weekend to help Jerry’s Kids who are afflicted with muscular dystrophy. The firemen will be accepting donations between 10 a.m. and 1 p.m. Saturday at Pontiac Wal-Mart and Sunday at Big R. With the firemen is Elizabeth Hallam, of Pontiac, the Goodwill Ambassador for the MDA for Central Illinois. She suffers from spinal muscular atrophy type 1. Firemen from left are Scott Runyon, Todd Gould, Andy Vitzthum and Jace Weaver. (Photo provided)

There is a 4 1/2-year-old Pontiac girl who is surpassing a doctor’s prognosis of not celebrating her second birthday.

Elizabeth Lee Hallam, born Sept. 29, 2003, was diagnosed with SMA (spinal muscular atrophy) type 1 on May 11, 2004. Her parents, Christen Huette and Brandon Hallam, learned that this was the number one genetic killer of children under the age of two.

SMA is a group of inherited and sometimes fatal diseases that destroys the nerves controlling voluntary movement. This affects crawling, walking, head and neck control and even swallowing.

Two months after Elizabeth was diagnosed, she was placed in a clinical study at Stanford, Calif. The study is funded by MDA, but the cost of the trip, their lodging and Elizabeth’s medication, which costs between $200 and $300 a month, are not. The mother and daughter must travel to the California hospital every four months for follow-ups.

“It’s hard to get the money, but we do it for Lizzy,” Huette said.

They discovered early in the study that Elizabeth was not on a placebo, but was taking the medication hydrozyurea, which was developed by Dr. Ching Wang.

“Her movement increased after taking the medication for two weeks,” said her mother. “When she was first diagnosed, she didn’t move the bottom part of her body at all. She was moving her legs, starting to bend her legs while laying flat on the floor, and she looked like she had more energy.”

Elizabeth started to lose her ability to swallow after a case of strep throat soon after their first trip to Stanford.

“She got really ill and would gag when eating or refused to eat at all. Our doctor's nurse told me, ‘There is nothing more doctor can do for Elizabeth.’ Their opinions have since changed because of how well Elizabeth has been doing for the past three years.”

A nissen/g-tube saved Elizabeth's life, her mother said. A swallow study had showed Elizabeth was silently aspirating on liquids.

Elizabeth requires around-the-clock care, which is shared between family members. She has physical therapy once a week

Huette said she owns a van, but it does not have a wheelchair lift. A ramp was built at their Pontiac home by RAMP. She is inquiring into a home school video conferencing live feed, which is funded by a foundation. Her daughter can not mix daily with other school-age children, as a simple illness would land Elizabeth in the hospital for two weeks, or worse.

Huette said her parents, Herb and Jeanne Huette, have helped her and Elizabeth through their trials, as have the other members of the family.

Huette also praises the efforts of Senator Barack Obama and State Sen. Dan Rutherford, R-Chenoa, who have both come to her rescue when she battles “red tape.” “I have them both on speed-dial,” she said.

The Pontiac Fire Department is another group that is helping Elizabeth fight her battle. They will conduct their second and third “Fill the Boot Drive” this weekend. On Saturday they will be at Wal-Mart from 10 a.m. to 1 p.m. Sunday’s collections will be at Big R from 10 a.m. to 1 p.m. Monetary donations collected for the MDA drive will stay in this area, a press release said.

1 comment:

Anonymous said...

I have to say that SMA type 0 is awful. They cannot move at all, smile or talk, and rely on a machine to keep them alive at every waking moment. It's life support at it's finest. The only thing they have is their eyes and that slowly too is affected. So is it right to have this child suffer on a ventilator?