 Hailey Marie Gee
Hailey was born on
December 31, 2003 to
Kandace, a mother who
was innocently awaiting
the arrival of her little girl.
Kandace knew something
was wrong, when the
nurses took Hailey away
right when she was born.
Kandace didn't get to see
her little girl like she had
dreamed, after giving
birth to this new little life!
When the doctors came
to explain to Kandace
why they rushed Hailey
out, they knew nothing
except the fact that she was
missing skin in several areas all over her body. Soon after,
Kandace would find out that her little girl had what is known as
EB or Epidermolysis Bullosa.
EB is a group of diseases characterized by blister formation after
minor trauma to the skin. This family of disorders, most of
which are inherited, range in severity from mild to the severely
disabling and life-threatening diseases of the skin. This rare
genetic disorder affects all ethnic and racial groups. Estimates
indicate that as many as 100,000 Americans suffer from some
form of EB.
Try to imagine a person with painful wounds similar to burns
covering most of his or her body. Unlike burns these wounds
never go away. For children, riding a bike, skating, or participating
in sports is difficult because normal activities of children
causes chronic sores. Wounds may cover up to 75 percent of the
body. Imagine a diet of only liquids or soft foods because
blistering and scarring occur in the mouth and esophagus.
Scarring also causes the fingers and toes to fuse, leaving deformities
which severely limit function. Imagine a life tied to hospitals
for wound treatment, blood transfusions, biopsies and surgeries.
The eyes often blister preventing sight for days. Chronic anemia
reduces energy and growth is retarded. There is little hope for life
beyond 30 years. Children with EB are often referred to as
Butterfly Children because their skin is as fragile as a butterfly's
wings.
 Well, we are privileged to have our very own Butterfly Child,
Hailey. Hailey is in first grade and when you first see Hailey, you
notice that her skin is very different, with peels and cracks all
over. BUT once you MEET Hailey, you see FAR beyond the
skin that she wears into a special little person with a heart of gold
and a spirit for life that we should all posses! This little gift is not
hindered by her appearance and is so confident and open to
share with you all about herself, including "what's wrong with
her skin". In the first minute of knowing Hailey, you don't only
fall in love, but you are inspired to live without complaining, for
what her and her mother endure on a daily basis is more painful
then what most of us what will endure our entire lives.
Hailey has the recessive condition of
this disease, which is the most severe,
with a life expectancy not much
longer then 20+ years. Hailey loves
what all little girls love, and her wish
for herself is to go to Disneyworld,
an Aquarium or to a concert because
she loves music. Hailey's mother's
wish for her, outside of a miracle, is
to have the things she needs to take
care of her on a daily basis, a surplus
as to not have to go through the
rigmarole of insurance hoops. But
when asked what she would love to
do with her daughter that would take
them away from the day to day dealings of the pains of "life" she
simply said, "a vacation".
Charity for Charity's mission is to make a significant
difference in the lives of others in our community and inspire
others to accomplish incredible things, but in the case of
Kandace and Hailey, with their faith and confidence, these 2 will
surely inspire us to accomplish incredible things!
For more information on EB www.ebkids.org or go to Hailey's
blog on MySpace; www.myspace.com/haileymariegee or her website at http://www.healinghailey.com
Peggy Tanous interviews Hailey Gee about Epidermolysis Bullosa - January 30, 2012
Disney Cruise
We had an amazing time on the Disney Cruise. Hailey was smiling, laughing and dancing almost the entire time. She loved all the Disney characters and the wonderful plays put on at night. One of her favorite nights was Pirate Night where we all dressed up in pirate attire. She danced the entire time they were putting on the pirate dance performance and copied the dance moves like "swab the deck" and "ahoy there matey". Hailey loved Mexico and seeing all the sites and picking up souvenirs. When we were disembarking she was asking when our next cruise would be! A definite sign she enjoyed herself immensely and would cherish the memories all her life.
It has been such a blessing having Charity for Charity in our lives over this past year. Experiencing the generosity of others touches our hearts and our lives. Some of the biggest burdens have eased and the experiences we had this year from the Stars of the Valley event, amusement park visits and the Disney Cruise have given us such joy and appreciation. These are things I could not provide for Hailey alone and have only happened through the love and compassion of others. Thank you so much!!!! - Kandace
Legoland
David and Karen LaPointe, of LaPointe Wealth Management donated to both beneficiaries and their families, tickets to Legoland! As you can see, they had an amazing time! Special things happen for Charity for Charity beneficiaries! And the doors continue to open...
"We had a lot of fun. Turned out to be the perfect day to go. Hailey loved legoland and the aquarium there. She was really excited to be able to see fishies there too." - Kandace |
Brian Klein
