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Nikki Tait's Fundraiser:

Charlie Bear's Scoot for Hope

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Nikki's Photo
Nikki's Photo
Nikki's Photo
Nikki Tait

THE STORY:

Charles Mattis was born on May the Fourth (be with you), 2014. The youngest of five, Charlie joined a family full of happy noise, friendly chaos, and loving determination. His birth was scary for mom and dad; a tight nuchal cord left Charlie gray, limp and not breathing after birth. He needed resuscitation, and had trouble breastfeeding over the next several months.

During this time, his Marine dad was diagnosed with stage 4B Hodgkins Lymphoma. As a family, we launched into a motivational fight, the likes of which we had never faced before. By 9 months old, it became apparent to Charlie's pediatrician that he wasn't growing very well anymore. His height and weight percentiles had dropped to below zero, and his head size had dramatically decreased as well. He was no longer meeting his milestones, and was yet to roll over. Since that time, Charlie's dad has finished chemo, and is in remission, yet suffers from a crushed spine, side effects from treatment, and daily pain as his body attempts to heal from his lesions.

Charlie is now almost 1.5 years old...and rolled over for the first time just last week! He has had countless blood tests, doctor's visits, and receives biweekly physical, occupational, speech, and feeding therapies. His height and weight remain slow, but his head is now growing at a near-alarming rate. At 14 months old, our Charlie Bear learned to scoot across the floor on his bottom! Our determined little Bear loves to play with balls, and by tossing one around the room found just the motivation he needed to start the scoot. His hypotonia and ataxia prevent him from learning any other coordinated movement just yet, but we know our Bear will get there!

Despite chromosomal micro array, blood tests, and other specific testing for genetic cause, we don't have a reason for our Bear's puzzle pieces. He is over 6 months behind, developmentally, with his 10 month lag in gross motor skills being his biggest obstacle. As a family, we are looking for help to raise money for Whole Exome Sequencing (WES). This blood test looks at his DNA on such a specific level, that we are hoping to piece together all of his little quirks and come up with the whole picture. As a new technology, WES is still very expensive given the exactitude and time needed to sequence. What will this completed puzzle show? Well, a beautiful portrait of what makes our Bear so incredible.

Our goal is to identify exactly what he will need in life to excel as he is made, and to bring hope and answers to other families who have children designed similar to Charlie. As our Bear scoots forward in life, he remains charming and happy, full of laughter and love. Please consider helping him scoot forward with as much clarity as we can gain from this incredible technology, and consider any donation to Rare Genomics' Amplify Hope, and Charlie Bear's Scoot for Hope.

DONATE

To This Fundraiser

$5,750

MONEY RAISED
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  • natalia olortegui

    $20

  • Lori Ross

     

  • Anita Landis

     

  • Marly Jones

    $45

  • Raeanne Holder

    $40

  • Steven-Ashley Pound

    $20

  • Michelle Mortensen

    $25

  • Stacy Ruddick

    $40

  • Alyson & Andrew Ward & family

    $25

  • Lopez Family

    $20

  • Lee Masiello

    $20

  • Aunt Anita's friend Angela

     

  • Mike Bennett

    $100

  • Linda Rincones

    $50

  • Justin, Kristen, Grayson & Camden Van Giesen

     

  • Ray, Margi, Patrick, Sarah & Gracie

    $150

  • Anna Kinsley

    $20

  • SKT Cunningham

    $100

  • Angela Patrick

    $20

  • The Gutierrez Family

    $300

  • Bob and Liz

    $100

  • Anonymous

    $10

  • The Cropper's

    $100

  • Jennifer Fredericks

    $10

  • Kristin Maloney

    $25

  • Molly Reid

    $35

  • Megan Scheib

    $350

  • Spiers clan

     

  • Diane Rincones Hess

     

  • Anonymous

    $25

  • Tara Liss-Marino

     

  • Nick and Megan Milak

    $100

  • RUTH TAIT

    $100

  • Garry and Susan Scheib

     

  • Klimas Family

    $30

  • On

    $15

  • Genene Charles

     

  • Tom & Rita MacDonald & Gianna

    $100

  • Betty and Jerry Conlon

    $200

  • Anonymous

    $15

  • Tiffany

    $40

  • Coach Wilson

    $200

  • Tom, Jenna, Gavin, Jackson and Sloan Toland

    $50

  • Luff family

    $30

  • Marijn de Jong

    $50

  • The Jenkins Family

    $50

  • TeamAshlynn

    $50

  • Cousino Family

    $20

  • Rick and Calene Smith

    $50.28

  • Rare Genomics

    $200

  • Deal Family

    $25

  • Nana McKenney

    $10

  • On

    $10

  • Anonymous

    $50

  • Ginger

    $25

  • Lisa Paradise

    $50

  • Cangelosi Family

    $15

  • The Dunleavy's

    $100

  • Rachel Winn

    $30

  • France

    $50

  • Anonymous

    $10

  • Eryn Braue

    $30

  • Willow

     

  • The Downeys

    $100

  • Arianne Udell

    $100

  • Annie & Lorelei

     

  • Anonymous

    $10

  • Nikki Beden

    $40

  • Grummer family

     

  • The Kennedy Family

    $50

  • Jenny Territo

    $15

  • Katie

    $50

  • Anonymous

    $1,225

  • RARE GENOMICS INSTITUTE INC

    $200

  • Stan and Rosann (Marc's Mom)

    $50

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105% Raised of $5,500 Goal

Fundraise for this Campaign

The Team: $5,750 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Nikki Tait

Amount Raised

$5,375

 

98% Raised of $5,500 Goal

Fundraiser Title

Anita Landis

Amount Raised

$265

Fundraiser Title

Raeanne Holder

Amount Raised

$80

Fundraiser Title

Lori Ross

Amount Raised

$20

Fundraiser Title

Corissa Seraydarian

Amount Raised

$10

Fundraiser Title

Susan Cunningham

Amount Raised

$0

Donor Comments

Stan and Rosann (Marc's Mom)

Stan and Rosann (Marc's Mom)

DONATION: $50

2 years ago

RARE GENOMICS INSTITUTE INC

RARE GENOMICS INSTITUTE INC

DONATION: $200

Congratulations for winning the most social shares contest! 2 years ago

Anonymous

Anonymous

DONATION: $1,225

2 years ago

Katie

Katie

DONATION: $50

2 years ago

Jenny Territo

Jenny Territo

DONATION: $15

2 years ago

The Kennedy Family

The Kennedy Family

DONATION: $50

Love you Sweet Charlie! 2 years ago

Grummer family

Grummer family

2 years ago

Nikki Beden

Nikki Beden

DONATION: $40

You guys are so strong and such an inspiration. Hoping that you can get that beautiful boy with the infectious smile the best care and therapy available. xo 2 years ago

Anonymous

ANONYMOUS

DONATION: $10

2 years ago

Annie & Lorelei

Annie & Lorelei

Much love to Charlie Bear, the boy with the best laugh ever. 2 years ago