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WHO CARES: Chronic Illness in America
WHO CARES: Chronic Illness in America

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Becky Shively
Niagara Falls, NY


I am a Mom of a PKU (phenylketonuria) child. He was born looking perfectly normal on the outside. I received a call when he was 10 days old that there was a problem and I knew he had PKU. He has a half-sibling from his father's previous marriage with the disorder. The hospital was amazed. They had never heard before of half-siblings having PKU, since both parents have to be carries. What was even more amazing was that my friend of 20 years had a girl four years earlier with severe PKU. I used to say for an extremly rare disease I sure had enough kids with it running around my house. The blood tests that need to be done are the easy part. The kids get used to it and don't usually put up much of a fight.

The everyday heartache comes when feeding your child could damage them mentally. With PKU a certain enzyme that digests a specfic part of protein is missing causing it to toxify the brain. Researchers are unsure how a liver defect can cause brain damage, but with PKU it does. The diet is made mostly of fruits and vegetables. Specially made pasta, breads and now cheeses! There is a special formula they need to consume everyday. It is a very time consuming endever. I am constantly boiling pasta or mixing up baked goods. The foods are terribly expensive and hard to get. Insurance pays for my son's diet, but others are not so lucky. Parents know without this food the diet is impossible to maintain a good blood level. It is for those other parents, my girlfriend included, that I started a support group. To find other parents and to unite to help our children "get the basics" -- namely food.

We would love a cure for this disorder. In our lifetime though we realistically just hope for a better treatment through research. I thank the March of Dimes for giving money to research for this rare "orphan disease" that affects some of the children closest to my heart.

YOUR STORIES
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Betty Bennett, Kidney Disease
Roxanne Bedford-Curbow, Seizures
Valerie Brekke, Fibromyalgia
Lily Casura, Chronic Fatigue
Billie Davis, Peripheral Neuropathy
Penny Day, Chronic Obstructive Pulmonary Disease
Julia DeJesus, Seizure Disorder
MS Patient, Fairfax, VA
Charisse Farmer, Hydrocephalus
Katherine Fielder, Chronic Pain
Zoe Francis, Juvenile Diabetes
James Hines, Hemochromatosis
William Holford, Emphysema
Nancy K, Chronic Fatigue Syndrome
Patricia Lawson, Natural Rubber Latex Allergy
James Locke, Crohn's Disease
Gary Maslow, various
Kathy Matthews, Parkinson's
Andrea Meyer, MS
Gina Owens, Chronic Fatigue Immune Dysfunction Syndrome
Alicia Salas, Chronic Pain
Allison Scott, Chronic Pain
Deborah Serrano, Stroke
Becky Shively, Phenylketonuria
Jennifer Smallin, Type I Diabetes
Joanna Southerland, Diabetes
Alina Valdes, Cystic Fibrosis
Elizabeth Wertz, Seizures

WHAT WOULD YOU DO?
Jose Pedro Greer, Physician
W.F. Nagle, Physician
Ronda Riebman, Exercise
Cathleen Schilling, Case Manager
Jim Sykes

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