BENEFITING: GALACTOSEMIA FOUNDATION
EVENT DATE: Jun 26, 2016
Imagine your baby was born ill with a rare disorder that cannot yet be cured and affected your child's diet. Doctors scramble to find out the cause of the illness, while you're anxiously waiting on test results. Galactosemia is a rare genetic disorder that affects a person's ability to digest milk. A person with Galactosemia does not have the ability to process galactose. If left untreated, it can severely damage a person's liver, brain, kidneys, and various other organs. Galactosemia affects 1 in 60,000 people, so it is very rare, but it can be life-changing. It took doctors almost 2 weeks to diagnose me with Galactosemia, and for an ill newborn, that is a very long time to wait. At the moment there is no cure. But there is treatment - a restricted diet that excludes any dairy. It is extremely crucial to follow the diet because otherwise a person with Galactosemia can become very sick. Every two years, there are conferences throughout the United States, which allow people who have this disorder to get together and receive all of the latest research about Galactosemia. It is very exciting to learn about all of the different ways that doctors are searching for a cure for this disorder. However, since Galactosemia is so rare, doctors need more resources, including money, in order to perform all of the procedures to get more information. This is where you can help! Doctors and hospitals around the nation are working hard, trying to piece together the puzzle that will help us find a cure or a more advanced treatment method. The conferences are a magical place where families are able to receive support and be reminded that they are not alone. I am here asking for support for the doctors, for the people who have Galactosemia, and for their loving families. Anything that you can give would be truly appreciated and will go directly to the Galactosemia Foundation.