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And we get to share a weekend with Rare Disease Day this year, a special day set aside for all those who are diagnosed with a rare disease across the nation! Will you GLOW up with us?? We are offering at local Knoxville Family fun mile (we are bringing it back FREE this year and ask for donations only) + a 5K run, with an option to run with a team ANYWHERE in the country (US only). We strive to make this a Family Fun event, with GLOW face paint, the yummiest food truck in Knoxville, sidewalk chalk, and a playground for all ages + bounce house fun! We hope you will mark your calendar and come hang with us as we celebrate our rare ones, and enjoy time together joining fitness, competition, and community!
This is such a vital heartbeat to this entire event and is such a fun way to plug into our mission and our community! Last year we had 150+ people join with 22 states represented and we would love to see both of those numbers rise as we band together to raise awareness, build funds for more research, + connect to more families! To see members of the Galactosemia community, along with their loved ones and friends, put their own twists onto this virtual component sets this event ablaze!! To find out more information, or chat with Brittany, the race director, please email firstname.lastname@example.org!
If you have any questions about this race, click the button below.Questions?
This event was born two years ago with the birth of Ansell Elizabeth Cudzilo. Ansell was born 6 weeks premature in Knoxville, TN as the third daughter of Brittany and Ben Cudzilo, and as her life began to unfold in her days in the NICU, she went from a very strong premie to very ill, without much explanation. We (b+b) watched as she became lethargic, stopped eating, stopped crying or responding to stimuli such as heel pricks, her jaundice levels were uncontrollable even with strict management under bilirubin lights, and her stools were starting to show signs of liver decline. Then on day 7 of her life, as her liver enzymes were increasing without any understanding to why, at a mere 4lbs, she was diagnosed with Galactosemia.
If you are anything like us, you had never heard of this disorder... its rare, and it usually kills a child in 10-14 days if it goes undetected. Every newborn in the United States is screened for it in the hospital with a simple heel prick, and this screening saved Ansell's life. Her immediate symptoms started to clear as we took breastmilk out of her feeding tube and put her on a strict non-dairy diet. She came home on day 13 of her life, at 4lbs 5 ounces, and started thriving. We wished this was the end, that all was healed, but Galactosemia is invisible... and the damage lives on.
Ansell is now 2, and she is a thriving, beautiful, strong willed two year old! She, however, operates 6-8 months developmentally behind. She has a weaker right lower side of her body, which has caused her motor skill development to be in the 15% percentile and her balance to be a challenge. She has speech frustrations, and because of this ends up screaming a lot due to mis-communication (many people mistake that she has a raspy voice due to the strain on her vocal cords). Ansell has a 10% chance of escaping the diagonsis of Pre-ovarian failure, and there is a high likelihood she will be in menopause before most girls hit puberty, meaning her chances of having her own children are very slim, though it's not impossible. On top of this she fights sensory processing disorder, and has troubles with sleep and anxiety. Every child with Galactosemia has a different story- and because its invisible many people do not realize this is Ansell's reality.
What Ansell fights (and she does fight- thanks to that strong will), we also celebrate, which is much of why this event exists. Galactosemia has brought a second family into our lives, a community of people that we didn't know existed. She has taught us the importance of perseverance, of showing up for one another, of perspective and not allowing a difficulty to become an identity. We have an incredible team of doctors, therapists, and nurses who watch her and love her SO well. What doesn't come to her well has created such a unique personality and major expression, that wins over anyone she comes into contact with.
Ansell was just the very small beginning... we were able to pull in a few local (within driving distance) families such as Isaac, Haley-Jo, Adrian, and Anderson... AND NOW this event celebrates kids and adults all over the United States who have her same diagnosis. We celebrate Max in South Dakota, Oliver in Pennsylvania, Lexi in Kentucky, Jamie in Virginia, Brodie in Montana, JoJo in New York, and so many more! All the money we collect goes straight to our foundation, and gives the foundation the ability to fund research projects and provide education for all of our families across the globe. Ansell may have been the catalyst, but what has kept this event going strong is ALL of our community, and ALL of YOU who choose to join with us in our efforts to not only raise awareness and funds, but to CELEBRATE what makes our loves different.
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