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Registry Number 56816969     ShareThis

31st December 2008

Hello Everybody,
 
Most of you know that I have a niece  PAIGE.  Well she will be 4 years old on December 31st.  A very big step for her. 
Paige Jayden was diagnosed with Spinal Muscular Atrophy Type 1 at the age of 4 months old.  We were given the worst news in our lives, this disease is fatal, with no cure, and that she would not live to be over 2 years old. She received a gastrostomy shortly after diagnoses and a tracheotomy at about 6 months old.  She requires the use of a ventilator 24 hours a day and suctioning to remove secretions form her mouth and lungs.  Paige is an alert, bright, intelligent child who attends Project Able at Marshall Elementary school.  Like most 3 years old girls she enjoys being read to, watching TV,princesses, fairies, and "Fancy Nancy".  She is loved and accepted by her family and all those who take the time to get to know her.
 
Just a little info:
Spinal Muscular Atrophy (SMA) Type 1
SMA  occurs when a vital gene (Survivor motor neuron gene SMN) is deleted or mutated preventing the creation on the protein necessary for muscle strength.  A second, nearly identical copy gene SMN2 is present in all SMA patients.  SMA is an autosomal recessive neurodegenerative disease characterized by a dramatic loss of spinal motor neurons   resulting in muscle weakness, atrophy, and in the worst cases the ability to breathe and swallow.  The mind is unaffected while the muscles waste away.
 
Our family is looking for some help.  My grandmother, Paige's Great-grandmother has hand made a queen size quilt and we are raffling ioff along with gift certificates in hopes to help in the expense of a wheelchair accessible van.  Paige has gotten to big for her car seat and is very hard to get her in the car with all her equipment. 
 
The raffle will be held on her 4th birthday December 31st 2008
 
The tickets are    1  for  $1.00   or    6  for   $5.00 
 
I would be happy to fill out the raffle tickets for you.     
 
We all thank you in advance,

Jamie & Family

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Registry Number: 56816969
Picture Item Total Amount Contributed Remaining Amount you wish to give
VAN Money :) $5,000.00 $590.00 $4,410.00
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