Raising Hope for A Beauti-FULL Life
Thank you for taking the time to visit my Fundraising Page. February is Rare Disease Month. This is not just a month for Kaia but for the over 25 million people in the US living with a Rare Disease.
This month, we walk a mile in their genes!
Exercise and movement is so important to people with PWS. So this month, I encourage you to get out a walk a mile (or a couple). A mile a day, a week, or just 1 for the month to show your support for all the rare kiddos like Kaia and everyone else living with a Rare Disease.
This is our family’s 4th Rare Disease Month! (Though I don’t think I actually knew about it until at least the 2nd or 3rd time) and it seems like the perfect time to get our fight for a FULL life started! We are motivated to take action to ensure all of Kaia’s friends with PWS and their families have the benefit of passionate advocacy, exceptional family support, and life-changing research!
Why are we fundraising?
We are fundraising to give Kaia a FULL life! Kaia was born with Prader Willi Syndrome which is a complex genetic disorder resulting from an abnormality on Chromosome 15. It causes low muscle tone and feeding issues at birth, and potential cognitive delays, behavioral problems, low metabolism, and chronic insatiable hunger as she gets older. Prader Willi is the #1 genetic cause of childhood obesity.
Currently, the only treatment is daily injections of Human Growth Hormone. Kaia began her injections at 3 months old! HGH will help her increase her lean muscle mass, decrease fat production, increase metabolism, and even increase cognitive ability! We were so lucky to be able to start so early!
There are still so many complications with PWS and so many questions unanswered! We need help! All funds raised will help to support PWSA | USA's work in Family Support, Advocacy, and Research! The best gift you could give to me is a donation (in any amount) to support the important work of Prader-Willi Syndrome Association USA! Thank you!
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