Being from southern Louisiana we are known for our amazing food!! Louisiana doesn't have winter, summer, spring and fall.. We have crawfish season, crab, oyster & shrimp season. All our festivals are named after food: Ex:) Catfish Fest, Alligator Festival, French Food Fest., Gumbo Fest..
Now could you imagine your world being revolved around food but in a different sense??? Always feeling like you are starving to death, when you are not and only having 1/3 the metabolism as a typical peer so you only need 1/3 the food & calories to function! This is what my daughter lives with day in and day out, Prader-Willi Syndrome.
When Kylar was first diagnosed one of the first doctors told me, "It’s a feeling of hunger not like you skipped breakfast and its lunch time and your body is hungry.. It's more like you have been trapped in a desert for 7 days without food or water and your body is literally feeling like it is starving to death." If you have a child you cannot imagine the horrifying reality of what your child is going to have to go through day in and day out, and there is NOTHING to control or stop this pain(no surgery or medicine).
BUT THIS IS WHY WE FUNDRAISE IN HOPES OF A CURE OR MEDICINE that will help our loved ones dealing with PWS manage day to day functions…
Without awareness, there is no funding.
Without funding, there is no research.
Without research, there is no cure.
Without a cure, there is no hope.
WE NEED TO WORK TOGETHER TO MAKE SURE
THERE IS ALWAYS HOPE!!
Please find it in your heart to donate every little bit helps..
"We are so hungry for a cure!"
These are local news and video segments that Kylar was involved in!!
~~WWL News segment with Meg Farris 2019: https://www.wwltv.com/article/news/health/mothers-advocacy-helps-bring-conference-for-rare-condition-to-new-orleans/289-a047544d-946c-41c9-80db-b501c89c7564
~~Front Page of the Herald Guide: http://stcharlesheraldguide.net/details.php?id=16556
~~United Way Video for 2014: https://www.youtube.com/watch?v=0MaIpqdySFM#t=16
~~United Way Video for 2015: https://www.youtube.com/watch?v=zTcOxkpTTjs
~~WWL-News segment with Meg Farris 2012 : http://www.wwltv.com/story/news/health/2014/09/03/14578834/
~~WGNO-News With a Twists segment 2014: http://wgno.com/2014/10/29/overcoming-the-odds-through-therapy-horses/