Hey everybody, it's Kennedy! Today I made a video about what I want for Christmas. I want you to tell me what you want for Christmas! I hope you enjoy the Video! Thank you!
Love, Kennedy
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July 30- Aug. 2, 2015 - Chicago
Chronicling the adventures of one amazing, funny, sweet, outrageous young lady, who happens to have CHARGE syndrome!
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A welcome message from a young Kennedy circa 2006!
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What is CHARGE Syndrome?
From the
CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.
Continued research is needed to help us understand the medical and developmental challenges facing individuals with CHARGE. Better understanding will lead the way to interventions, therapies and educational strategies which can help people with CHARGE syndrome overcome many of the obstacles in their lives.
One of the hidden features of CHARGE syndrome is the determination and strong character these children display.
12th International CHARGE Syndrome Conference
July 30- Aug. 2, 2015 - Chicago
Kennedy's Friends and Links
- chargesyndrome.info (Kennedy's Old Web Site)
- CHARGE Syndrome Foundation
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20 comments:
Kennedy that sounds like an awsome gift.
I want the Wii Fit for Christmas, I have to work out a bit before my brothers wedding next Oct and the Wii Fit would be perfect for that.
My kids want all kinds of things, My oldest son Alex is about to turn 13 this month and he wants Guitar Hero 3 which I heard Santa has a ton of them ready to go. MY middle one Bailey wants lots of legos he loves to build things. And Eva I am not sure what she wants but she really did like that Elmo Live when we saw him at that store so we might have to chat with Santa about that one.
If you get the Disney Sing along for the Wii I hope you make a video and post it for us so we can hear your wonderful singing voice.
Hugs,
Crystal and Eva
I like your video. I want to get lots of clothes and new basketball for Christmas. I can't wait for Christmas to come.
Your friend,
Saleah Lewis
for Christmas I would love a GIANT smile all over your face and blooming from you heart :o) because you are precious beyond all measure and my wish is for you to find the delight in every moment of your life <3 <3 <3 yuka -keith's mum
For Christmas, I want lots and lots of good books to read. It is not possible to have too many books! From your mom's friend, Meg
Hi Kennedy,
I love all your new videos! Thanks for sharing them with us. I want a Magna-hoop for my embroidery machine to make it easier to sew things for my 3 boys! My 6 year old twins, Sam and Gus, both want a Nintendo DS. Sam also wants a Webkinz Pug and Gus wants Littlest Petshop pets. Luke, my 21 month old CHARGEr, isn't able to tell us what he wants yet, but Santa will probably bring him some fun toys for toddlers since he is getting older.
And I agree with Crystal, if you get the Disney Sing along you are going to have to post a video for us. Hope you have a Merry Christmas!
Dear Kennedy,
I LOVE LOVE LOVE your blog!
Like Crystal, I also want a Wii Fit for Christmas.
I also want my foot to feel better!!
Hmmm? What else do I want for Christmas? I want Peace on Earth; happiness for all the people I love; and chocolate!
love,
pam
Hi Kennedy--
This is my first visit to your blog. I like it! I hope you get Disney Sing and a few surprises, too.
What do I want for Christmas? Like most moms, I want my kids to be happy and healthy. For myself, I want the wii fit. It's a good thing my 13-year-old daughter, Sarah, wants it too so Santa won't have too much to carry. Eddie can't tell Santa what he wants, so Sarah told Santa that Eddie would like a nice big swing for inside the house. He'll really like that.
Hi Kennedy, what an incredible blog site you have here and I love all of your videos and especially your poetry. For Christmas I would like to build a blogsite for my grandson Dylan who has CHARGE and will be 7 months old by then. Personally I have asked Santa for a pair of walking boots, some music CD's, a new scarf as my old one has worn out and lets the cold in and a new exercise bench.
Hope you have a great Christmas!.
Love Steve (Grandad to Dylan, Solihull, UK)
Kennedy I hope you sent your request early, it appears Wii is popular!! Amélie's eldest two sisters want a Wii for christmas and I think they are such good fun for all the family to be together...so we are busy making sure that wish comes true.
Amélie is getting her very first doll as she now likes to touch and feed them.
Fleur wants a new bike but I told her she has to clean her messy bedroom each day before I send her letter to father christmas...mummy blackmail!!
And I just want some time to not have to do school work for my dissertation...your mummy will know all about that !!
Great site. I am very impressed.
Kennedy you are fantastic
Have a wonderful holiday and Christmas.
Liz
Hi Kennedy, I love your new video! For Christmas I would like a sparkly pink dress :)
Hi Kennedy
For Xmas, I want a new iron, some new blush and make up and maybe a gift certificate from Reitman's to buy some new clothes. Let's hope Daddy reads this. :)
I want a new set of pajamas. I love the flannel ones. I have a pair that have cats on it and they are so comfortable!
Alexis wants a piano (she's 2). She loved to play the piano at my parents' house. They have a piano / keyboard that has lights.
Jessica wants some new clothes (she's 1). She usually wears Alexis' old clothes. She would like some new dresses and tights.
Hi Kennedy! Emilia is 1 and she wants a Clipo Activity Table and blocks. She also wants a few more "Sign Times" DVDs to add to her collection. I hope you and your family have a great holiday season.
Love Shelly, Guy and Emilia in Boston, MA
Hi Kennedy,
We read your blog all the time but this is the first for us to post. My little Charger Christopher wants anything to do with spongebob and a little trampoline so he can jump and I want the new animal crossing game for the Wii. Christopher's two year old twin brothers would like a ball pit and his sixteen year old brother wants a PSP. I hope you have a wonderful Christmas and that your Christmas wishes come true!! If you do get that game that you want I agree with everyone else about the video :)
Kennedy, I asked Santa for a new purse and a book light for Christmas. Katie wants some new coloring books and a digital picture album. Hope Santa brings you everything you want! Merry Christmas!
Leslie & Katie
Hi, Kennedy! I am so excited that Vivian gets to be home with us for Christmas this year! That is my biggest wish because last year she was in the hospital on Christmas. I can't wait for our entire family to be together, eating and celebrating!
I think Viv's going to get a new Signing Time video and a fridge farm - farm magnets that make silly sounds for the fridge.
We love to watch your videos so much!
Love, Hannah and Vivian
I want a Wii too! You are very lucky to have one :)
hi kennedy how are you my christmas was fun
miss u kennedy
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