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

Anonymous

May 21, 2022

$5

Raoul Chung

May 21, 2022

$52

Jill Thorne

May 20, 2022

$10

Steven Rajewski

May 19, 2022

$52

Elly Trickett

May 15, 2022

$104

Mike Parise

May 13, 2022

$52

Dan Brown

May 11, 2022

$52

Jeff Durrett

May 11, 2022

$104

Daniel Masterson

May 8, 2022

$104

Leah Levitt

May 5, 2022

$104

Victoria Hernandez

May 1, 2022

$52

Ryan Rooney

April 16, 2022

$208

Alison O Meara

April 13, 2022

$21

Clare Millar

April 11, 2022

$52

George Kakovkin

April 11, 2022

$52

Robin Kelly

April 11, 2022

$52

Gary Leboff

April 11, 2022

$104

Andrew rooke

April 9, 2022

$21

Ilke Bac

April 9, 2022

$52

Whitney Weimer

April 9, 2022

$104

Simon Hedges

April 7, 2022

$52

Jimmy Lance

April 6, 2022

$104

St. Nicholas of Myra

April 6, 2022

$104

Dr Drongo

April 6, 2022

$104

Daniel Masterson

April 6, 2022

$104

Claire Morpeth

April 5, 2022

$26

Leah Levitt

April 5, 2022

$104

Xavier Duponcheel

April 3, 2022

$26

Werner Oprins

April 2, 2022

$52

Nadine Vinandy

April 2, 2022

$52

Victoria Hernandez

April 1, 2022

$52

Anonymous

March 26, 2022

$52

Matt Roscoe

March 22, 2022

$31

Maya Marmo

March 22, 2022

$104

Adrian Grenier

March 19, 2022

$260

Anonymous

March 17, 2022

$104

Anonymous

March 17, 2022

$104

Anonymous

March 17, 2022

$31

Anonymous

March 17, 2022

$104

Susan Smith Baca

March 16, 2022

$52

SEAN COGGIN

March 16, 2022

$21

Jim McKinney

March 16, 2022

$21

Stephanie DeGooyer

March 15, 2022

$50

Jarod Harmeier

March 15, 2022

$260

Michael Farfel

March 14, 2022

$104

David Harraway

March 14, 2022

$21

Todd Hawkins

March 12, 2022

$104

Whitney Weimer

March 9, 2022

$104

Melinda Hammonds

March 8, 2022

$104

Daniel Masterson

March 5, 2022

$104

Leah Levitt

March 4, 2022

$104

Susan Conn

March 4, 2022

$104

Reginald Quinerly

March 3, 2022

$208

Peter Francome

March 3, 2022

$10

Anonymous

March 2, 2022

$10

Anonymous

March 2, 2022

$52

marcus junius laws

March 2, 2022

$104

Anonymous

March 2, 2022

$21

Lee Ann Fewell

March 2, 2022

$260

Lynette Walker

March 1, 2022

$31

Noble Carpenter

March 1, 2022

$15

Aaron Hale

March 1, 2022

$21

Amy Peters

March 1, 2022

$104

Jennie Todd

March 1, 2022

$104

Tony Komforty

March 1, 2022

$21

Melissa Humphreys

March 1, 2022

$104

Jermaine Stegall

March 1, 2022

$208

Victoria Hernandez

March 1, 2022

$52

Anonymous

March 1, 2022

$156

Dan Cedillo

February 12, 2022

$104

Joey Smith

February 11, 2022

$260

Giulio Cetto

February 11, 2022

$52

Nicholas Frampton

February 10, 2022

$156

Sam Pankey

February 10, 2022

$52

Amy Scheihagen

February 10, 2022

$104

Ruben Baeza

February 10, 2022

$104

Isabel Deniz

February 10, 2022

$31

Angeel Fisher

February 9, 2022

$52

Marissa Villarreal Bliss

February 9, 2022

$104

Whitney Weimer

February 8, 2022

$104

Catherine Howington

February 8, 2022

$104

Elijah Parr

February 8, 2022

$104

Ashleigh Scott

February 8, 2022

$104

Jana Arevalo

February 8, 2022

$104

Ariel Saldivar

February 8, 2022

$104

Joe Causey

February 8, 2022

$52

Amber Parman

February 8, 2022

$104

Khomthorn Cunvong

February 8, 2022

$52

Melissa Davis

February 8, 2022

$104

Anonymous

February 8, 2022

$104

Leslee Welch

February 8, 2022

$104

Rachel Nidenberg

February 8, 2022

$52

Michelle Pruett

February 8, 2022

$52

Anonymous

February 7, 2022

$104

Garrett Noble Smith