If you live in Utah and want to make me happy, you should attend the PKU Night at the Museum on August 15th. The event is being put on by IPAD (Intermountain PKU and Allied Disorders Association), an organization that has helped us immensely since we first found out Avery has PKU.
The day we found out Avery has PKU we were completely devastated. It was so scary and confusing. There was so much we wanted to know and so much we were afraid of. We met with a geneticist and dietitian at Primary Children's Hospital for a very long time that day. It was overwhelming and I pretty much cried my eyes out the whole time (post-pregnancy hormones did not help). Within an hour after we got home from the hospital, I got a call from Amy Oliver, who started IPAD several years ago. She talked me through my tears and asked if she could come the next day to visit with us. When she came to visit, she brought a newborn kit, which had a lot of helpful information and resources about PKU--including a scale, a low protein food book that we use to look up the PHE content in the foods Avery eats, and a binder full of important information about PKU. Amy stayed and talked with us for a couple of hours and, having 2 kids with PKU herself, answered a million questions and eased a lot of our fears. I could not have made it through those first few weeks without her help.
Anyway, my point in telling you this story is that some of the money that is raised at the PKU NIght at the Museum goes to support these newborn kits. It also helps fund things like low protein cooking classes where we can learn how to make delicious (albeit sometimes complicated) low protein foods suitable for a PKU diet. There is also a PKU camp for kids with PKU and other things that have helped us cope and learn to better care for Avery. In short, it means a lot to us!
It will be a really fun event that you can bring your whole family to so if you can come, PLEASE do!
PKU Night at the Museum
Natural History Museum of Utah
308 Wakara Way
Salt Lake City, UT 84112
What is PKU? Phenylketonuria (PKU) is a rare genetic disorder in which the body cannot break down an essential amino acid called "phenylalanine" or "Phe". Approximately 1 in every 15,000 newborns is diagnosed with PKU. Left untreated, PKU causes many neurological problems, including seizures and mental retardation. Treatment consists of a carefully controlled, phe-restricted diet throughout life. People with PKU cannot eat high-protein foods such as meat, dairy, eggs, nuts, beans, wheat, grains or soy. People with PKU drink a medical formula each day to help them get the vitamins and minerals they cannot get from food. There is no cure for PKU, but with proper education and a closely followed diet, children with PKU can grow up to live happy, healthy lives.
Join the Intermountain PKU and Allied Disorders Association for a night of fossils, fun, friends, and fundraising for a good cause!
At PKU Night at the Museum you and your family can experience all of the wonderful exhibits at the new Natural History Museum of Utah and enjoy desserts and drinks while raising awareness and funds for PKU and Allied Disorders.
There will be a silent auction with lots of great items. Some of the items include: Utah Jazz tickets, gift cards, gift certificates, gift baskets, sports and entertainment items, and much, much more!
Tickets are $10 each or $40 for a family (2 adults and up to 4 kids). Just click on the "Register Now" button below to register.
If you're unable to attend PKU Night at the Museum, please consider making a tax-deductible donation. You can do so by clicking on the "I can't make it" button below.