News from Billingsgazette.com Nov. 23, 2007

Teen with rare genetic disease lobbys for benefit legislation
By The Associated Press
MEETEETSE - Kenneth Allen, 18, has wanted to be the president of the United States since he was in the fourth grade and is already knee deep in politics, having helped draft a bill that personally affects him and his family - a bill that calls for amendments to the Newborn Screening Bill.

Kenneth, a Meeteetse High School student who suffers from a disease knows as phenylketonuria, a genetic disorder that inhibits the body from digesting the amino acid phenylalanine, is actively trying to amend legislation so that people living with PKU in Wyoming can get continued state assistance after the age of 18.

Radical change in diet

Living with PKU for Kenneth means that he radically has to modify his diet, much of which is supplemented with a metabolic formula that he receives through the Wyoming Department of Health. That formula costs around $100 per can, and Kenneth goes through about 16 cans per month. If Kenneth doesn't adhere to his strict diet he risks mental retardation and central nervous system problems.
In 1999 the Wyoming Legislature enacted a law that required newborn screening in hospitals to test for hearing defects and metabolic diseases.
Kenneth is looking to change the age at which the state cuts off assistance so that people living with PKU or other metabolic disorders do not have to undergo financial hardships.
Hunter Allen, 10, Kenneth's younger brother, also suffers from the genetic disorder and is Kenneth's motivation for trying to amend the current legislation.
"I am not doing this for me," Kenneth said. "I am doing this for my little brother and for other people that suffer metabolic disorders in Wyoming."
Life-changing moment
When Kenneth was little he was introduced to a child that suffered from PKU. This particular child was never on a modified diet plan and did not get screened for the disorder.
"He was in a wheelchair," Kenneth said. "He couldn't walk, he couldn't talk, all he did was scream and cry. When I saw him I thought 'I am not going to be like that, I am going to stick with the diet.' It gets difficult especially during the holidays."
With a passion for politics and with the help of state Rep. Dan Zwonitzer, R-Cheyenne, Kenneth has drafted amendments to the Newborn Screening Bill, which extends the length of time a person can receive benefits from the Wyoming Department of Health.
Kenneth is following the advice given to him by U.S. Rep. Barbara Cubin, R-Wyo., who he met on a high school field trip in Washington D.C. She told him never to give up, even if it doesn't work out the first time.
"It will pass in legislation, it's just a matter of when. If it doesn't happen this year it will happen next year," he said.
Life is a bit different for Kenneth and his younger brother. They have to do monthly blood testing, eat a strict diet and travel to Denver for extensive testing once every six months. Although it was hard when he was younger, Kenneth doesn't feel his disorder makes him different from his peers.
"It was hard when I was little because everyone would ask me why I couldn't eat. It would make me feel left out. That's how you are when you are little, you don't want to be different from anyone else."
Other than living with PKU, Kenneth and Hunter participate in normal Wyoming activities, such as hunting and hanging out with their friends. He said he feels he is no different than anyone else and can accomplish anything in life so long as he follows his diet.
"I don't like the word special, because we are not special, we are different. We have a normal life. As long as we stay on the diet nothing can stop us from doing what we want."
Following his dreams, Kenneth is planning a career in politics, his passion. During the weekends and all summer he holds the position of assistant clerk at the Meeteetse Town Hall. After graduation Kenneth plans to study business and law.
"I like politics in general, that's one of the things that is helping me get through this," he said.
All Kenneth needs now is a representative to sponsor the bill. During the next budget session, representatives are only allowed to sponsor a certain number of bills, and Zwonitzer already has a number of bills on tap.
Kenneth said he understands and has been looking to get the support of a local state representative.

 

      <----back