Never heard of Galactosemia?! Yeah, us either before June 20, 2017... and since learning it exists, our lives have been changed.
We are the Cudzilos and our 3rd daughter Ansell is the sweet soul that jumpstarted GLOW for Galactosemia. She has changed our lives and our hope is that our efforts with GLOW will change hers (+ the others living with her disorder)!
She was diagonsed via the Newborn Screen 7 days after her premature birth... a test which saved her life. Now we are fighting the effects, and are petitioning for YOUR help!
Galactosemia is a genetic disorder that affects approximately 1 in every 60,000 babies born. To give some perspective, this means that out of around 4 million babies born in the United States this year, only about 67 babies will be given this diagnosis. It is rare and it has fatal consequences if the disorder is not caught early (within 10 days of birth) and if precautions are not taken immediately.
Even after the initial diagnosis and dietary change there usually are life long consequences. Many babies suffer from cataracts at an early age, elevated liver enzymes that signify liver damage, developmental and speech delays, motor skill impairment, kidney damage, and in adolescence many see hormonal irregularities that eventually lead to infertility and in women pre-ovarian failure (EARLY menopause).
There is no cure. There is no drug to take. Yet.
Help us give those with Galactosemia a brighter future!
We want YOU to be involved- in whatever way you can be!!
Be a SPONSOR! Be a PARTICIPANT! Start a VIRTUAL team! Get involved! We need YOU!
EVENTS IN KNOXVILLE-
March 3, 2019
1. Family fun run, 1 mi., 4:30pm-5 pm
2. 5k race, 5:30-6:30pm
3. 10k race, 5:15-6:30pm
Find out ALL the details by clicking below!