Noble was born on May 23, 2019 with a rare brain disease called Semi Lobar Holoprosencephaly. Although the condition itself is an extremely challenging one, Noble is a real life miracle and overcomes so many daily battles that these children face. Unfortunately, we are still in constant need of financial resources and will be throughout his life. Read below to find out how you can help!

$16,307 Raised of $500,000 Goal

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Hello everyone! It’s hard to believe it’s been over two years since Noble was born. It would be impossible to share all we’ve experienced the last two years with this precious little boy, but we did want to update everyone who has been with us on this journey and to once again thank each and every one of you for your support over the last couple of years. We could not have made it without you all.

First off… Noble is amazing! He is the most joyous, happy, smiley, sweet giggly, radiant little human we’ve ever known. He is a rare treasure and we are head over heels in love with this little boy. Every day we have with him is precious gift. If you’ve had the good fortune of meeting him, you immediately understand what an amazing child he is the moment you step foot in the same room as him! For those of you who haven’t yet met him, we really hope you get the chance someday. He is sure to give you a smile and undoubtedly make your day

brighter.

When Noble’s condition was discovered one month before his due date, we were told the life expectancy of most semi-lobar holoprosencephaly children was between 6 months to 2 years old. Due to the nature of his disorder, and how each case was unique, there was no way to predict or tell us anything except that the outcome was grim. This news was obviously devastating and we were consumed by every imaginable fear and overwhelming sense of sadness imaginable.

The wonderful news is that more than 2 years later, Noble is still here with us! He has beaten so many odds already and continues to amaze us and prove to us how incredibly strong he is. With that said, reality is that Noble’s day to day life is extremely challenging on so many levels.

He sees 10 different Doctors regularly, 3 different therapists every week, and has been through several terrifying hospital stays. He’s had multiple surgeries and gets blood work drawn almost every week. He needs medical equipment that he will outgrow, multiple life saving medications, and in home nursing care. As he grows older, his condition will present ever changing and difficult challenges.

We desperately want to give him every opportunity to thrive and live the best life he can. Unfortunately, beyond the emotional, psychological, and physical toll that is part of raising an HPE child, there is also a massive financial burden that is never ending. So far we have been denied by Medicaid, Social Security disability, and The Hope Fund. We have applied to many other organizations that offer financial assistance, but haven’t gotten any responses. All of this has left us financially crippled, stressed and completely overwhelmed.

Two years ago we were humbled at the outpouring of love and support from so many of you. We will never forget how we were surrounded with love, financial gifts, and kindness from all over. As we continue down this ever changing and challenging road, we will keep fighting in every way we can. We will make appeals, meet with state representatives, and advocate for other families in the same position we are in. We are planning our first ever music and arts festival called “Noble Fest” to bring awareness to holoprosencephaly and to raise money for other HPE families.

Although there is so much uncertainty that lays ahead for our family, we face it with joy and gratitude. We appreciate any donation you can make to help lighten our load and help us further down this road.

Love,

The Smiths

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Thank You Donors!

MICHAEL THOMPSON

June 22, 2022

$26

Matthew Moffitt

June 16, 2022

$52

Whitney Weimer

June 9, 2022

$104

Steve Wilcox

June 8, 2022

$52

Daniel Masterson

June 6, 2022

$104

Victoria Hernandez

June 1, 2022

$52

February 8, 2022

$52

Anonymous

February 7, 2022

$104

Garrett Noble Smith

$16,307 Raised of $500,000 Goal

CLICK HERE TO DONATE

Thank You Donors!

MICHAEL THOMPSON

Matthew Moffitt

Whitney Weimer

Steve Wilcox

Daniel Masterson

Victoria Hernandez

Anonymous

Raoul Chung

Jill Thorne

Steven Rajewski

Elly Trickett

Mike Parise

Dan Brown

Jeff Durrett

Daniel Masterson

Leah Levitt

Victoria Hernandez

Ryan Rooney

Alison O Meara

Clare Millar

George Kakovkin

Robin Kelly

Gary Leboff

Andrew rooke

Ilke Bac

Whitney Weimer

Simon Hedges

Jimmy Lance

St. Nicholas of Myra

Dr Drongo

Daniel Masterson

Claire Morpeth

Leah Levitt

Xavier Duponcheel

Werner Oprins

Nadine Vinandy

Victoria Hernandez

Anonymous

Matt Roscoe

Maya Marmo

Adrian Grenier

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Anonymous

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Susan Smith Baca

SEAN COGGIN

Jim McKinney

Stephanie DeGooyer

Jarod Harmeier

Michael Farfel

David Harraway

Todd Hawkins

Whitney Weimer

Melinda Hammonds

Daniel Masterson

Leah Levitt

Susan Conn

Reginald Quinerly

Peter Francome

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marcus junius laws

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Lee Ann Fewell

Lynette Walker

Noble Carpenter

Aaron Hale

Amy Peters

Jennie Todd

Tony Komforty

Melissa Humphreys

Jermaine Stegall

Victoria Hernandez

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Dan Cedillo