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Heroes Journey CrossFit

Organized by: Heroes Journey CrossFit

Heroes Journey's Photo
Heroes Journey's Photo
Heroes Journey's Photo
Heroes Journey's Photo

Event Name: HEROES GIVING BACK - MEDICINE FOR DEMI

EVENT DATE Dec 05, 2014

THE STORY:

EVENT DATE: DEC 05, 2014

DEADLINE TO GIVE: DEC 05, 2014

On December 5th, we will be hosting the second annual Heroes Giving Back Competition to help one of our own! Fellow CrossFitter and Hero, Demi-Lee, a student at Morris Hills High School in Rockaway, is in need of critical chemotherapy treatment for CIDP (Chronic Inflammatory Demyelinating Polyneuropathy), an immune disorder affecting the nervous system.

 

In true CrossFit fashion, let's all get together, sweat, compete and raise money for an inspiring young woman and her phenominal family of crossfitters and athletes.

 

Please help the Heroes Journey Team to raise as much money as possible for Demi!  Make a donation today and share this on your facebook page to spread the word. 

 

Please contact Thomas@heroesjourney.com with any questions!

 

WANT TO FALL IN LOVE? READ MORE ABOUT DEMI BELOW...

 

At the age of 13 Demi-Lee was diagnosed with Guillain Barré Syndrome / GBS (An acute polyneuropathy, a disorder affecting the peripheral nervous system with weakness beginning in the feet and hands and migrating towards her abdomen).

 

Last year Demi-Lee experienced a relapse and her previous GBS diagnosis was adjusted to CIDP (considered the chronic cousin of GBS). The hallmark of the disease is loss of the myelin sheath (the fatty covering that insulates and protects nerve fibers) of the peripheral nerves.

 

Chronic inflammatory demyelinating polyneuropathy is believed to be due to immune cells, cells which normally protect the body from foreign infection, but here begin incorrectly attacking the nerves in the body instead. As a result, the affected nerves fail to respond (or respond only weakly) to stimuli, causing numbing, tingling, pain, progressive muscle weakness, fatigue, and abnormal sensations. The likelihood of progression of the disease is high. CIDP only reportedly affects 7.7 per 100 000 people (North American CIDP studies).

 

Demi-Lee had recently completed Plasmapheresis which involved the removal of her blood plasma from blood circulation. (Blood was removed from the body, her blood cells and plasma separated, with a mixture of her blood cells and albumen returned to her blood stream). Plasmapheresis is a procedure used in the treatment of a variety of immune system disorders, including GBS and works by removing your bodies T-Cells which are responsible for the attacking by your immune system of your peripheral nervous system (more specifically the destruction of the Myelin that encapsulates your nerve fibers).

 

Plasmapheresis was considered part one of a two part treatment regimen aimed at addressing the chronic inflammation / infection. Part two involved Rituximab infusion (Rituximab destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of B cells, overactive B cells, or dysfunctional B cells as is the case with autoimmune disorders).

 

Most recently our medical aid refused to allow for the administration of Rituximab.

 

Demi-Lee was administered a single dose of Rituximab when she was recently admitted to hospital with signs of weakening and fatigue. Recent blood tests have demonstrated a complete eradication of her B-Cells, an early indication that Demi-Lee’s physicians are on track.

 

Demi-Lee attends school in Morris Hills High School in Rockaway where she will be a senior this year. Demi-Lee is a member of the Morris Town U/19 High School Rugby program where she also serves as a Flag Referee (Denville Dawgs Flag Program). Doctors are amazed that Demi-Lee is even able walk and this is testament to her determination to overcome this disease – Demi-Lee has zero to nil sensation below her knees and so literally lifts her lower legs with her quads when attempting to run. Even though there are certain key rugby skills that CIDP will continue to hamper, Demi-Lee remains an enthusiastic young athlete. Recently she was invited along to the High School All American camp where she competed against healthy athletes for a sport on the US High School All American team. Unfortunately she was not able to make the squad but her beaming smile demonstrated the amount of fun she had had, and typifies her remarkable outlook on life.

 

Demi-Lee actively volunteers whenever possible and can be seen at the annual Denville river clean up each year. She and her sister also assisted Morris Rugby in supporting the recent rugby clinics hosted at the Pocono fields in Denville. Morris Rugby has been an integral part of our life since moving to New Jersey, and Demi-Lee’s father has been actively engaged in coaching across a number of Morris Town rugby programs including the Morris High School U/19 Boys, Morris Men and the New York & New Jersey Select Side.

 

At school Demi-Lee is deeply involved in the high school’s Anti-Bullying program in support of raising awareness for students with similar disabilities. She has run a number of anti-bullying campaigns at her high school, including a recent CIDP awareness drive that had her handing out CIDP bracelets in an effort to raise funds for the www.gbs-cidp.org foundation, a non-profit organization that both actively researches cures for the disease as well as makes treatment available to lesser privileged sufferers (which includes the securing of AFO braces to help address foot drop among patients). Demi-Lee was also recently inducted to the Morris Hills High School National Honor society, an amazing feat considering the amount of school she misses when she receives her monthly IVIG infusions. She also collected the Mathematics award, and will this year, in partnership with one of her high school classmates run the first gifted and talented TV 4 program.

 

Recently Demi-Lee coordinated the raising of funding in an effort to purchase teddy bears for the “Miss U-Can-Do-It” pageant. With the support of her High School, close friends and family, Demi-Lee was able to send of 20 teddy bears to this national non-profit pageant created just for girls and women with special needs and challenges.

 

We sincerely believe that her current treatment program will be instrumental in breaking / stalling her CIDP and allow her body the opportunity to recover.

 

DONATE

To This Fundraiser

$1,447

 

72% Raised of $2,000 Goal

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  • Heroes Journey CrossFit

    $100

  • The Gilroy Family

    $25

  • Kris Burfitt

     

  • Jillian

    $25

  • Gene & Rosita

     

  • Kate Harvie

    $200

  • Papa Chris Stepien

    $100

  • Anonymous

     

  • Deb VF

    $50

  • Leslie Shaw

     

  • Anonymous

    $100

  • Anonymous

    $100

  • Julia D'Amico

     

  • Kevin & Katy Rockwood

     

  • #DFTBA

    $50

  • Mindy Nagle, Wade Kirby, Leann Lipper, Sandra Guerra

    $74

  • Heroes Journey Members

    $148

  • Kate P

    $25

  • Anna

    $50

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Organized by

Heroes Journey CrossFit

This is a direct to organizer fundraiser.

Fundraise for this Campaign

The Team: $1,447 TOTAL RAISED SO FAR

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Donor Comments

Anna

Anna

DONATION: $50

3 years ago

Kate P

Kate P

DONATION: $25

Wish I could be there! Good luck tonight, everyone. :) 3 years ago

Heroes Journey Members

Heroes Journey Members

DONATION: $148

3 years ago

Mindy Nagle, Wade Kirby, Leann Lipper, Sandra Guerra

Mindy Nagle, Wade Kirby, Leann Lipper, Sandra Guerra

DONATION: $74

3 years ago

#DFTBA

#DFTBA

DONATION: $50

GET UP AND RUB SOME DIRT ON IT!! 3 years ago

Kevin & Katy Rockwood

Kevin & Katy Rockwood

3 years ago

Julia D'Amico

Julia D'Amico

for Demi! <3 go heroes! 3 years ago

Anonymous

ANONYMOUS

DONATION: $100

3 years ago

Anonymous

ANONYMOUS

DONATION: $100

3 years ago

Leslie Shaw

Leslie Shaw

Go get 'em, Demi-Lee 3 years ago

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