Cami Grundy, a life with Prader-Willi Syndrome

Cammi is an absolute joy when when she's like on and she's engaging she's playful she's fun she has a great sense of humor she is very thoughtful caring really great with people that are older and younger children sometimes you even forget that she has a syndrome when she's in those moments prader-willi syndrome is a is a genetic disorder involved in 15th chromosome child is born with it and it is a lifelong syndrome north as of right now there is no cure there's behavioral issues there's learning disabilities delays and a lot of things but the main thing that prader-willi syndrome is known for is an insatiable appetite so somebody with this syndrome cannot control their hunger feelings and if left to their own own desires they will basically eat themselves to death yeah Tammy's nickname is the stealth ninja and it's because she can walk around it so very quietly and she is very fast she'll grab food very quickly like if I'm in the kitchen I'm like really fast so I'm very fast at what we do I would I would take something out of the kitchen well I was going into the I'll take something out of the kitchen and I was looking into my room or if even if my mom was out killing the dining room I would fling it into my room anything like that my mom and dad have to watch out for the way that I like to explain the hunger for somebody with prader-willi syndrome is imagining striking yourself with your thumb with a hammer and then telling yourself not to feel any pain yeah it's it's virtually impossible and so possible for somebody with probably chance to not seek after food and to eat it when yeah it's there obviously we have a lock on the kitchen door that you have to put a code in because she if it's a key lock you know she'll get into it we have the house alarm it's just specifically for the front door and the back door because she'll leave the house and try to get food outsider come in a different way to do that so and we always have to check the locks at night make sure we set the alarm [Music] having a child with prader-willi syndrome is amazingly difficult and complicated I have a a a beautiful girl who has challenged me in great ways ways that I never could have done without her opened me up to a whole new world of understanding and understanding people and emotions Thank You Danny somebody with prader-willi syndrome is requiring their network their support to provide 100% food security and there are times where we fail her in that where something's either left unlocked or like a kitchen at the kitchen or food is left out and it's not because we're you know bad parents or it's just life gets in the way and you forget and so when she gets that added calories in the food that's outside of her regular diet it is a great feeling of remorse and guilt that comes across this because it's not her fault we're the ones that failed her she can't control it and it never is her fault it's always our fault and so when that happens it's it's emotionally draining it's exhausting and it's it actually makes me pretty sad you want your best for your kids and you realize in life that you can't take everything away that they have to experience you can only try to help see them through it and do the best that you can as a as a parent and as a human being and and so when I fail her in those ways of not having food security I I feel like I failed her as a dad and I just just want to be able to take the syndrome away from her we make up jingles yeah we go sing songs together yeah so like the journals me make up is on you my sweet pleasure the beat you're my sweet sweet clean Adobe and then it doesn't know much of us snake prey animal or don't keep me awake yeah yeah fell down a minute oh good job

Channel: The Day

Views: 743,650

Keywords: Connecticut, News, Groton, Prader-Willi Syndrome

Id: yYebPiA0IjM

Length: 5min 56sec (356 seconds)

Published: Sat Jan 25 2020