Rules keep Pontiac girl grounded

Elizabeth Hallam of Pontiac is a 5-year-old who was born with a type of spinal muscular atrophy (SMA) that has caused her to need to be treated by physicians in California three or four times a year. This plan has worked for the child until this year.
   

New Federal Aviation Administration (FAA) rules have put a huge stumbling block in her way.
    Instead of being able to fly to California for treatment this year, Elizabeth’s family will have to drive her to California for treatment of the SMA type 1 disease known as Werdnig-Hoffman disease.
    The FAA now says that travelers with respiratory difficulties cannot fly without new types of labeling on medical equipment.
    According to FAA guidelines, “Travelers with respiratory difficulties who use commercial airlines need to be aware of a new labeling requirement for ventilators, respirators, positive airway pressure devices and personal oxygen concentrators.”
    The new regulations require special labels on these machines to ensure that they meet FAA requirements for medical equipment. Trying to travel without following the new regulations may result in passengers being denied a seat, or being required to turn off the respiratory equipment during the flight.
    Lizzy, as she is called, will be unable to fly to California for her July 22 treatments with physicians because of these new regulations.
    “This will necessitate her family driving her to California,” said family friend Billie Semmens. “This means that the family will have to have funds for gas cards and money that could be used to stay in motels along the way and once in California.
    “This means they will also need to be able to have a car good enough to get them to California and back. We are hoping they will be able to rent such a vehicle.”
    Friends are hoping to raise money to help the family by holding a bake sale and car wash on Saturday from 10 a.m. to 2 p.m. at Pontiac’s Auto Zone. Monetary donations may also be made to a bank account named “Fighting for Lizzy” that has been established at Freestar Bank.
    Lizzy is the daughter of Christen Huette and Brandon Hallam of Pontiac. She is the granddaughter of Herb and Jeanna Huette.
    Lizzy was just a few months old when diagnosed with the disease. Her parents were told that she probably would not live past her second birthday without extensive respiratory support, and despite aggressive care, survival could not be guaranteed.
    According to Jeanna Huette, the family was able to get Lizzy set up in a Stanford University program for SMA type 1 children with Dr. Ching Wang.
    Lizzy first saw Wang on June 10, 2004, in California.
    “Lizzy still has the need to fly out to see Dr. Wang every four to six months in order to stay on the medication and in the treatment program,” said Huette. “She is doing so well now, I don’t want to see this come to an end because she cannot fly to California.
    “The new FFA guidelines are so stringent that manufacturers of this medical equipment have just not yet been able to achieve all this new labeling.”
    Huette said she hopes by any appointment Lizzy may have later this year in California that the labeling situation is resolved.
    “Lizzy does so well with this program and we have been able to keep her enrolled in it and been able to get there in a relatively easy manner. I just don’t want government regulations to ruin her method of care,” Huette said.