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TEAM SKYLAR

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Skylar's Photo
Skylar's Photo
Skylar's Photo
Skylar's Photo
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Skylar's Photo

BENEFITING: PRADER WILLI SYNDROME FAMILIES UNITED INC

EVENT: Walk and Roll for PWS 2016

EVENT DATE: May 14, 2016

Skylar jones

THE STORY:

Hello, I would like to take a minute to introduce myself. My name is Skylar Lee Jones. I was born with a rare genetic disease called Prader-Willi Syndrome. I love to sing, laugh and play! Every year we do this really cool walk where we raise awareness and money for PWS. I always like to tell my story so everyone can really see the joy I have in life verses what they may think.

So, here it is. My story. 

When I was born the doctors did not know what was wrong with me. They did many tests and finally weeks later I was diagnosed with PWS. Although it was a hard thing for mommy and daddy to swallow having a diagnosis was a start. My fight would start and never end that day forward. 

Feeding was a challenge. I was not able to breastfeed nor bottle feed. I had a tube in my nose that allowed me to eat. I worked very hard with my parents to try to bottle feed but the doctors would not let me go home until I got a g-tube put in. Reluctantly my parents agreed to this surgery and a G-tube was put in and I was able to go home! 

Upon arriving at home my parents were determined to get me to eat from a bottle and a week later there I was, eating from a bottle! It was not long before the G-tube was taken out of my belly! It was a lot of work and I did not like the way it felt when they took it out! I now have two belly buttons! But its okay, its just another thing that adds to how special I am. 

Onward we go, from the day I got home from the hospital I was in a program called birth to three and I had physical, occupational, and speech therapy. I also had a nutritionist. 

I wore an eye patch for a very long time to try to fix the muscle in my right eye. It helped a little but we have upgraded to glasses. I have strabismus and later on the doctor says I will need surgery for my eye muscles. But for now I always have the cutest glasses thanks to mommy's fashion sense!

I also have hypothyroidism and take a pill every morning to stay "regular."  I also get a shot every evening, this is my growth hormone shot. I am used to it by now so it really doesn't bother me. 

I go to preschool with a bunch of my friends! And although I am not talking yet I have a few words that I like to say and I know a lot of signs. I have so much fun at school and all my teachers love me! I hug and kiss them everyday! My favorite is reading Curious George books! 

Well, I could probably go on more but I think you get the idea. I have a lot of challenges ahead of me but I have a great family behind me. I am strong and I am great! I will keep being a strong little girl and I know I will be successful. 

I hope that you take the time to read my story and I hope furthermore you donate and register for the walk. 

Every dollar raised goes to research for Prader-Willi Syndrome. 

Hope to see you at the walk and thanks in advance for donating!

Love, 

Skylar Lee Jones

REGISTER

$6,045

MONEY RAISED
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  • Kelli Walden

    $20

  • Alicia Vereen

    $25

  • Christina Bibisi

    $30

  • Matt Jes & Luke Moskey!

    $100

  • Nana Pat

    $50

  • Jennifer Lynn

    $50

  • Lucy roman

    $20

  • Tamie Jones

    $100

  • Joey Fresh

    $300

  • Lonnie Mishoe

    $25

  • Michele and Michael John Gagnon

    $100

  • Vianney Acevedo

    $50

  • LisaB

    $100

  • Megan Tamara

    $50

  • Samantha

    $25

  • Bobby Petriccione

    $50

  • Richard and Barbara Langley

    $50

  • Auntie Terri and Auntie Kriss

    $100

  • Mike Minutillo

    $25

  • Michele McLaughlin

    $50

  • Stacey Marie

    $25

  • Auntie Heather

    $25

  • Laurie pegram

    $25

  • Stephanie

    $25

  • Tom and Sheryl Overton

    $25

  • Fredys Benavides

    $25

  • Donna & Gino Moncada

     

  • Kristin & Masyn

    $30

  • Sophia Bartell

    $25

  • Uncle Billy Aunt Shannon and Mallory

    $50

  • Carla Kranmas

    $25

  • ABCKids

    $25

  • The Howarths

    $50

  • Jen Pac

    $25

  • Donna

    $100

  • Yvette Mercado

     

  • Anonymous

    $50

  • Marcia Kranc

    $20

  • Nikki Ruffino and Josh Isleib

    $25

  • Michael Bolton

    $25

  • Vivian & Gerry Rabinovitch

    $25

  • Eleanor Morgan (and parents)

     

  • Anonymous

    $50

  • Heather Baker

    $25

  • Jessics Cotto-Diaz

    $20

  • Masyn

    $10

  • Jennifer Monterio

    $25

  • Holly Wojcik & Nick De Gemmis

    $50

  • David and Michael Marino

     

  • Noelle W.

    $25

  • Charleigh

    $100

  • Paulann Marianella

    $25

  • The Duong family

    $25

  • Morgan and Chase Thomas

    $20

  • Darryl Jones - Local 804 Teamsters - UPS Yonkers Center

    $1,220

  • Alyssa & Grandma & Grandpa

    $100

  • Willette Family

    $50

  • Joe & Cindy Walker

    $50

  • Karen Hunihan

    $50

  • Bobbie Hayes

    $50

  • Uncle Bruce @ Louise

    $50

  • Cheryl & Michelle

    $100

  • Darryl & Nella Pelkey

    $100

  • Nonna (Tina Moncada)

    $100

  • Uncle Ed

    $100

  • Anonymous

    $100

  • Daniel & Rita Bafumi Molnar

    $50

  • Anonymous

    $25

  • Doreen's Dance Center

    $25

  • Cindy and Andrew

    $50

  • Grandma Helen

    $50

  • Katrina Skroupa

    $50

  • Verna Ellam

    $20

  • Jennifer Adorno

    $25

  • Tara Dionizio

    $25

  • Grandma Lorie

    $25

  • Matt & Stephanie Sykes

     

  • Meg and family

    $75

  • Andrzej Laz

    $25

  • Jennifer Desimone

    $25

  • Yvonne

    $10

  • Heather Duong

    $30

  • Kimberly Shaw

    $25

  • Vicki Squires

    $25

  • Doug

    $15

  • Phyllis & Vincent Carta

    $100

  • New Hampshire

    $105

  • Auntie Heather

    $40

  • The Heng Crew!!

    $25

  • Kyle & Bebe

    $100

  • Winshell & Kellie

    $25

  • Rory

    $10

  • Jay & Stephanie Campbell

    $25

  • Auntie Sarah & Sade

    $50

  • Connor McCarthy

    $25

  • Ernestine Jones

    $100

  • Gator & Linda

    $100

  • Tina & Adam organek

    $100

  • Teresa Marinucci

    $20

  • Jessica's color room salon

    $25

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86% Raised of $7,000 Goal

Donor Comments

Jessica's color room salon

Jessica's color room salon

DONATION: $25

2 years ago

Teresa Marinucci

Teresa Marinucci

DONATION: $20

Go team Skylar 2 years ago

Tina & Adam organek

Tina & Adam organek

DONATION: $100

Wanted to help reach your 6000$ goal! Good luck sky your a beautiful Young lady with an amazing team behind you! 2 years ago

Gator & Linda

Gator & Linda

DONATION: $100

2 years ago

Ernestine Jones

Ernestine Jones

DONATION: $100

Grandma Loves You Sky 2 years ago

Connor McCarthy

Connor McCarthy

DONATION: $25

2 years ago

Auntie Sarah & Sade

Auntie Sarah & Sade

DONATION: $50

We love you so much Sky. 2 years ago

Jay & Stephanie Campbell

Jay & Stephanie Campbell

DONATION: $25

2 years ago

Rory

Rory

DONATION: $10

2 years ago

Winshell & Kellie

Winshell & Kellie

DONATION: $25

Have a great walk! 2 years ago