Skip to content
henrymazurek1's profile image - click for profile

Henry Mazurek's Fundraiser:

Henry Mazurek - Epilepsy Foundation NYC 2016

Henry's Photo

BENEFITING: Epilepsy Foundation

EVENT: Epilepsy Foundation NYC 2016

EVENT DATE: Nov 06, 2016

Henry Mazurek

THE STORY:

Emma Rose Mazurek was born in the afternoon of December 28, 2013.  She was born a beautifully healthy baby girl.  She was a full term baby weighing over seven pounds.  Her little hands and feet were miraculously meticulous and so fine in their tininess.  She was the most perfect gift our family could have wished for to celebrate Christmas and the New Year.

Less than two months later, on February 14, 2014 – Valentine’s Day – Emma was diagnosed with a rare and debilitating form of infantile epilepsy called Ohtahara’s Syndrome.  No words could have prepared us for this news or what we would soon experience.  Despite the best efforts of top pediatric neurologists in the country, Emma’s seizures could not be controlled.  She suffered literally hundreds of seizures per day.  These seizures eventually left her unable to swallow, eat and even breathe.

On March 12, 2014, after only 74 days of life, we lost our precious baby.  She passed away at home in our arms surrounded by her loving family.  We could never have expected to lose Emma so young and so suddenly.  She leaves a hole in our hearts so big that words cannot describe it.  A baby’s cry will never sound the same to us again.  We only console ourselves knowing that Emma Rose won’t suffer any more and that she is in a better place.  But we all just miss her so desperately.

During Emma’s short time with us, we gained more than we ever believed possible from having and holding and loving such a wonderfully special and pure little baby.  Emma Rose taught us all lessons in love, courage and even hope.  For us, we not only have our precious memories of Emma, but we also have her enduring legacy, through which we can only hope to help ease the journey of other families who are struggling to cope with their own children’s battle with epilepsy.  We intend to use Emma’s life as a beacon to lead us to raise awareness and funds for research and treatment so that organizations like the Epilepsy Foundation of Metropolitan New York can help to better the lives of all those children afflicted with seizure disorders.

Emma Rose continues to be our inspiration and our constant reminder of what really matters in life.  Emma, exquisite and everlasting in our hearts, we love you and will miss you forever. 

DONATE

To This Fundraiser

$7,091

MONEY RAISED
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  • Chilton Harper

    $100

  • Isabelle & Cristina

    $250

  • Roland Riopelle

     

  • Michael Ward

    $100

  • Amanda and Ross

    $50

  • Deborah Colson

     

  • Dee and Chuck

    $500

  • Kristen Churchill

    $250

  • Caroline Rule

    $262

  • James Harkins

    $100

  • Julia Gatto

     

  • Willy & Christian

    $262

  • Rita & Martin Goldstein

    $250

  • Adam Goldberg

    $200

  • Jordan Berger

    $25

  • David Brodsky

    $100

  • Emilia Wolfe

    $250

  • Amy and Ritchie Berger

    $50

  • Roger and Randy Stavis

    $50

  • Melinda Sarafa

    $100

  • Andrew J. Levander

    $500

  • Michael Tremonte

    $300

  • The Abbe Lowell Family

    $180

  • Anonymous

    $360

  • Laura Giardino

    $50

  • Franca and Joe Starvaggi

    $100

  • Dan Horwitz

    $100

  • Larissa

    $50

  • Mary and Clay Bibbee

    $100

  • Howard Master and Nicole Rice

    $27

  • Ginny and Ron Gunn

    $50

  • Ron Fischetti & Phyllis Malgieri

    $100

  • Amy Walsh

    $100

  • Jackie Gore

    $25

  • Veronica Saltiel

    $50

  • Seth Rosenberg and Catherine Lebow

    $500

  • Ramsey Hinkle & Olida LeTourneau

    $50

  • Robin and Brian Linder

    $250

  • Lucia Cepriano

    $100

  • The Porio Family

    $100

  • Irene Donahue

     

  • PublicRelay, Inc.

    $100

  • Henry Mazurek - Epilepsy Foundation NYC 2016 Created By: Henry Mazurek

    $250

  • Eric Creizman

    $500

  •  
  •  
  •  

Donor Comments

Eric Creizman

Eric Creizman

DONATION: $500

In memory of Lawrence Creizman 1 year ago

Henry Mazurek - Epilepsy Foundation NYC 2016 Created By: Henry Mazurek

Henry Mazurek - Epilepsy Foundation NYC 2016 Created By: Henry Mazurek

DONATION: $250

In memory of Emma Mazurek and my love of Henry and Paula Mazurek 1 year ago

PublicRelay, Inc.

PublicRelay, Inc.

DONATION: $100

1 year ago

Irene Donahue

Irene Donahue

2 years ago

The Porio Family

The Porio Family

DONATION: $100

2 years ago

Lucia Cepriano

Lucia Cepriano

DONATION: $100

In memory of Emma Rose Mazurek whose sweetness inspired love in all who knew her. 2 years ago

Robin and Brian Linder

Robin and Brian Linder

DONATION: $250

2 years ago

Ramsey Hinkle & Olida LeTourneau

Ramsey Hinkle & Olida LeTourneau

DONATION: $50

In Memory of Sweet Emma 2 years ago

Seth Rosenberg and Catherine Lebow

Seth Rosenberg and Catherine Lebow

DONATION: $500

2 years ago

Veronica Saltiel

Veronica Saltiel

DONATION: $50

In memory of little Emma 2 years ago