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Jennifer Duggan's Fundraiser:

Team RJD

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BENEFITING: Rett Syndrome Research Trust

EVENT: Team Eva

EVENT DATE: Oct 19, 2014

Jennifer Duggan

THE STORY:

Rett Syndrome is the most physically disabling of the autism spectrum disorders, primarily affecting girls, and usually strikes by 18 months of age.  It is caused by mutations on the X chromosome on a gene.  As the cascade of Rett Symptoms descends, a child loses acquired skills, normal movement and speech, then begins the long regression that may leave her in a wheelchair, unable to communicate or use her hands.  Extreme anxiety, Parkinson-like tremors, seizures and orthopedic problems are common. Imagine having a beautiful, healthy daughter! Imagine her first words, her first steps, everything she does is a miracle.   She reaches six months old, perhaps as much as eighteen months and she is the light of your life hitting every milestone. Now imagine that this perfect little girl, begins to change.  Subtly at first.  You notice that your little girl is not meeting those milestones anymore.  The milestones that she did meet start to disappear. Slowly, her speech begins to disappear.  She once had a few words she now screams in frustration. Toys she loved to play with lay abandoned as her hands won‘t do what she wants them to do: instead they have a life almost of their own: repetitive, uncontrollable movements.  As parents you are worried and searching on the computer googling every diagnosis you could think of. Imagine her convulsing uncontrollably as the first of many seizures take hold of her. Abnormal muscle tone causes her to have abnormal posturing as scoliosis sets in. Her breathing becomes erratic, as she holds her breath for a minute at a time. She may stop walking altogether She may be put on a feeding tube because of the lack of oral motor skills.  This lack of motor skills hinders her ability to coordinate food in her mouth. She will require 24 hour care for the rest of her life.  At this time your worst nightmare Al and I will NEVER forget the day we received the diagnosis of Rett Syndrome.  In our search for answers, we met other parents that have a child with Rett Syndrome and after meeting them we have learned that Eva is one of the “lucky, unlucky” ones.  Eva is able to walk, and has not yet had any seizures and she continues to be able to eat regular food.  We also realized that Rett Syndrome is a very rare disorder and there was not much for information available. We found there was very little research going on because of the lack of funding.   There is no grant money going towards Rett Syndrome research, and the only money that is funding the researchers for a cure is privately funded. We learned that a cure is a strong possibility, encouraged us to start the Eva Fini Fund.  In 2009 we began our mission.  We are anxiously waiting and will be participating in a clinical trial this fall. TEAM EVA will be traning for the Hambeltonian marathon or Relay.  All the traning that goes into this goal pales in comparison to the struggels that girls with Rett Syndrome experience everyday.  Please help us in raising much needed funds. Hide

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To This Fundraiser

$525

MONEY RAISED
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  • Changes Hair Salon

    $50

  • Rick Duggan & Noreen O'Shea

    $100

  • The Galarneau Girls

    $50

  • Holly and John

    $125

  • Amazing Grace

    $50

  • Kennedys

    $20

  • John & Jean VanDeMark

    $25

  • Rosemarie Williams

    $25

  • Siracusa Family

    $55

  • Aunt Kathy

    $25

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105% Raised of $500 Goal

Fundraise for this Campaign

The Team: $525 TOTAL RAISED SO FAR

JOIN THE TEAM

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Donor Comments

Aunt Kathy

Aunt Kathy

DONATION: $25

My sweet sister Mary 4 years ago

Siracusa Family

Siracusa Family

DONATION: $55

Good luck! 4 years ago

Rosemarie Williams

Rosemarie Williams

DONATION: $25

4 years ago

John & Jean VanDeMark

John & Jean VanDeMark

DONATION: $25

4 years ago

Kennedys

Kennedys

DONATION: $20

Have a great run for a great cause ! 4 years ago

Amazing Grace

Amazing Grace

DONATION: $50

Good luck Ricky, Jenn and Dennis! Love you Eva! 4 years ago

Holly and John

Holly and John

DONATION: $125

Thanks again and good luck!!!! Go Team RJD!!!! 4 years ago

The Galarneau Girls

The Galarneau Girls

DONATION: $50

This is for you Eva. 4 years ago

Rick Duggan & Noreen O'Shea

Rick Duggan & Noreen O'Shea

DONATION: $100

4 years ago

Changes Hair Salon

Changes Hair Salon

DONATION: $50

Good luck! 4 years ago