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Lori Kopczynski's Fundraiser:

Team Z

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BENEFITING: Little Miss Hannah Foundation

EVENT: Vegas Cares About Rare - CLOSED

EVENT DATE: Feb 25, 2017

Lori Kopczynski

THE STORY:

Zevan Kavadas who is 7 was diagnosed with Eosinophilic Esophagitis (EoE) in January of 2016. EoE is a chronic, allergic inflammatory disease of the esophagus; it occurs when a type of white blood cell, the eosinophil, accumulates in the esophagus and persists despite acid-blocking medicine. The elevated number of eosinophil’s cause injury and inflammation to the esophagus. This damage has made eating difficult and uncomfortable, resulting in poor growth, chronic pain, and at times difficulty swallowing. Since his diagnosis and after a year of treatment, he has seen a substantial healing to his esophagus. As of late December he is not on the steroid anymore that he had to swallow on a nightly basis and he does not currently have to take Prevacid 2xs a day.  His last Endoscopy unfortunately still show the strictures in his esophagus and although lower from last years diagnosis his eosinophil count remains high and is labeled severe this means we still have not determined the trigger source of his EOE.  Zevan does not have a known Food Allergy or Environmental allergy.  He does have chronic Rhinitis, which is a known symptom to EoE.  He will have to endure multiple dr visits, monitoring by his Allergist, Gastroenterologist and Pediatrician on a monthly basis.  He will have multiple endoscopies this year and we will have to to continually adjust his diet and monitor his nutrition between each endoscopy.  Most 7yr old children fall in a range for height & weight, Zevan is below average.  Most kids consume a minimum of 1,200+ calories daily.  Zevans calorie intake averages 700 a day, which means when he starts his day he is already behind in caloric intake.  To help keep him nourished and getting the proper nutrition he drinks a special hypoallergenic formula in addition to the normal foods kids eat.  Zevan is picky eater like a lot of kids but his EoE cause a hyper sense of taste, smell and sound.  He eats and likes what most 7yr olds eat however he requires monitoring to remind him to eat and drink, as he doesn't produce the same kinds of hunger you and I feel on a daily basis.  For those of you who have not had the pleasure to meet our son he is a happy, very intuitive, funny, sweet, kind, energetic and very smart,  (he hates to be called little) 7yr old boy. He excels at school and is popular amongst his peers as well as with the other kids in the different grades, he is loved by the staff at Henderson International.  And if you walk the halls with him everyone says hi to him! His current passions are Power Rangers (vintage collections), Minecraft and most recently taken up roller skating and continues to drive his younger sister crazy.  

Rick and I support many charities in the Southern Nevada community in addition to the many that support Rare Diseases.  Please help us support our Son and the other kids in Southern Nevada who have been diagnosed with a rare disease!

 

Cares About Rare 5K Run / 1M Walk is scheduled for Saturday, February 25th in Las Vegas (Kellogg Zaher Sports Complex). Proceeds from this event will benefit the Little Miss Hannah Foundation, a Las Vegas 501(c)(3) non-profit charity. The organization's mission is  to assist families caring for children that are diagnosed with a rare  diseases, life-limiting or complex medical conditions, and those children placed in palliative or hospice care.

This  event is scheduled to commemorate the celebration of World Rare Disease  Day, which takes place on the last day in February each year. Did you  know:  

  • There are over 7,000 rare diseases in the world
  • Rare disease affects 1 in 10 Americans
  • More than 50% of rare diseases affect children
  • 30% of children diagnosed with rare and genetic disorders don't live to see their 3rd birthday 

    During  this complicated time, families struggle to obtain expensive medical  and therapy equipment designed to provide safety to these children and  to improve the quality of their lives. The Little Miss Hannah Foundation provides this equipment at no cost to the families to enhance the quality of life of their children. Meet some of our special kids!

$375

MONEY RAISED
  • Lori Kopczynski

    $25

  • Anonymous

     

  • Todd & Amanda Hoaglin

    $100

  •  
  •  
  •  
 

22% Raised of$1,700 Goal

The Team: $375 TOTAL RAISED SO FAR

Fundraiser Title

Lori Kopczynski

Amount Raised

$375

 

22% Raised of$1,700 Goal

Fundraiser Title

Renae Egan

Amount Raised

$0

Fundraiser Title

Timothy Williams

Amount Raised

$0

Donor Comments

Todd & Amanda Hoaglin

Todd & Amanda Hoaglin

DONATION: $100

2 years ago

Anonymous

ANONYMOUS

2 years ago

Lori Kopczynski

Lori Kopczynski

DONATION: $25

For my Zev Zev 2 years ago