Dear Family and Friends,

Hello! I am writing to let you know about an exciting event happening on May 17, 2008 in Illinois. May is National PKU Awareness Month and throughout the month most states will be holding events to raise awareness and to raise money for research. Illinois is hosting a PKU Walk for research and will also have many activities and low protein food samples for the kids to enjoy. The Raitz family will be attending this event and would like to ask for your support. There are a few ways you can support us on this day… 1) Pray for beautiful weather 2) Pray for the people dedicating their time to researching ways to make life with PKU easier 3) consider donating to PKU research.

As many of you know our two youngest children (Zachary 3 ½ yrs, Madison 3 months) have a rare genetic disorder called Phenylketonuria (PKU). This disorder was discovered through routine newborn screening at the hospitals where they were born. If this simple test had not been done, the build up of phenylalanine or PHE (an amino acid in protein) would have started attacking their central nervous system. This build up would have done irreversible damage, leaving them mentally impaired and physically challenged.

There is no cure at this time. The treatment is primarily dietary consisting of medical formula and strict low protein diet (no milk, eggs, cheese, meat…) for life. The medical formula is covered by the State of Illinois but we must purchase special (and very costly) low protein foods from the few online companies that specialize in low protein foods.

We also do weekly (Madison) and bi-weekly (Zachary) blood tests at home to monitor their blood PHE levels. Based on the results their dietitian then adjusts their daily PHE intake. Zach and Madison both see genetic specialists at Children’s Memorial Hospital to monitor their development.

The FDA recently approved a new drug (KUVAN) that in some PKU patients allows a less restricted diet. Unfortunately, we just found out that Zachary is not a responder to this drug. Our prayer is that they will develop another drug/ treatment some day that will work for Zach and Madison, and allow them to experience a more liberal diet. In order for that to happen research needs to be done and unfortunately that is expensive!

Please consider donating to PKU research. All donations are tax deductible. If you are able at this time to donate please send checks (made payable to PKU Organization of IL) to us by May 15th for us to take to the walk or mail them to: PKU Organization of IL, P.O. Box 102, Palatine , IL 60078-0102 by May 31, 2008. For more information see http://www.pkuil.org/ .

Thank you in advance for your prayers and support for this very worth cause!

The Raitz Family