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

Henry Mazurek's Fundraiser:

Epilepsy Foundation of Metropolitan New York 2018 United Airlines NYC Half Marathon

Henry's Photo
Henry's Photo
Henry's Photo
Henry's Photo
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. For all of us, childbirth is a great miracle. And  Emma was no different. Her little hands and feet were miraculously  meticulous and so fine in their tininess. Paula and I were very proud  and gushing parents.
 

A short 74 days later, we lost our precious baby. She passed away in our  arms at home in the early morning hours of March 12. 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 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.
 

Emma Rose suffered from an infantile epilepsy called Ohtahara's  Syndrome. She suffered literally hundreds of seizures per day. These  seizures eventually left her unable to swallow and eat.
 

When Paula and I were first told the extent of Emma's epilepsy and what  it did to her brain and body, I thought we would never be able to deal  with it and would be overcome by fear to hold and care for her during  her seizures. But Emma showed us how to love.  Paula and  I felt more love than we ever believed possible from having and holding  and comforting this wonderfully special and beautiful little baby.   Calming her seizures in our arms were some of the most important acts  of our lives.
 

I have been running long distance races ever since Emma left us.   Perhaps I am running to heal, to outpace my sadness, but most of all to  remember Emma.  And if her memory can inspire any one of you to  help the other baby Emmas out there, and to provide those babies'  parents the resources of EFMNY, then Emma's life will live on in those  we help.    I am also running for all of those adults who live with epilepsy  every day and are afraid to share this fact with their work colleagues  and friends because they don't want to be viewed as someone different or  unable. I am running to erase the fear and discomfort that the word  "epilepsy" might cause in others or ourselves.
 

Together we can embrace a child with seizures; we can offer treatment to  a teenager who is struggling with developmental disabilities due to  seizure disorders; we can help a mom find a safe and fun kids summer  camp for children with epilepsy.
 

Please contribute to the Epilepsy Foundation of Metropolitan New York to  bring epilepsy patients out of the dark and into the sunlight of our  care and attention.
 

Do it in the memory of baby Emma Rose, who never had the chance to grow  up and be that girl who smiled at me at the finish line. Let us together  get to the finish line of eradicating epilepsy and its devastating  effects on our children, friends and family.

 

DONATE

To This Fundraiser

$2,200

MONEY RAISED
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  •  
  • Richard Levitt

    $250

  • Henry E. Mazurek

    $1,500

  • MICHAEL J. MANSFIELD

    $250

  • isabelle kirshner

    $100

  • Suzanne Jaffe Bloom

     

  •  
  •  
  •  

Fundraise for this Campaign

The Team: $37,723 TOTAL RAISED SO FAR

JOIN THE TEAM
Fundraiser Title

Richard Reczka

Amount Raised

$6,890

 

276% Raised of $2,500 Goal

Fundraiser Title

The Ganons

Amount Raised

$5,757

 

115% Raised of $5,000 Goal

Fundraiser Title

Timothy Schmidt

Amount Raised

$3,080

 

257% Raised of $1,200 Goal

Fundraiser Title

The Tildens

Amount Raised

$2,498

 

125% Raised of $2,000 Goal

Fundraiser Title

Heather Hemphill

Amount Raised

$2,350

 

78% Raised of $3,000 Goal

Fundraiser Title

Henry Mazurek

Amount Raised

$2,200

Fundraiser Title

Jessica Esposito

Amount Raised

$1,930

 

129% Raised of $1,500 Goal

Fundraiser Title

Gerard Riso

Amount Raised

$1,911

Donor Comments

Suzanne Jaffe Bloom

Suzanne Jaffe Bloom

In Memory and In Honor of Emma Rose 2 months ago

isabelle kirshner

isabelle kirshner

DONATION: $100

In Memory of Emma Rose 3 months ago

MICHAEL J. MANSFIELD

MICHAEL J. MANSFIELD

DONATION: $250

3 months ago

Henry E. Mazurek

Henry E. Mazurek

DONATION: $1,500

3 months ago

Richard Levitt

Richard Levitt

DONATION: $250

3 months ago