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Leap of Hope Bracelet
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| Briannes
Journey |

To
All Our Friends and Family
First of all, the
most heartfelt thank you goes out to each and every one of you who have
entered this website to read of our daughter’s courageous struggle,
known to many as “Brianne’s Brave Battle”. Brianne’s
life on earth ended very prematurely in February 2003, and even two years
later, it still seems so hard to grasp she is no longer with us here on
earth. Even with her departing way too soon, she was able to touch many
lives by showing us all the true meaning of love, hope and faith.

It seems
just like yesterday that I was able to read Brianne her bedtime stories,
hold her little hand and watch and listen to her recite the next scene
coming up in her favorite movie “Spirit”. I miss her adorable
smile and cute little laugh the most, but naturally as her mother; I miss
every little thing about her. I miss seeing her older sister Kayla running
around the house continuously to see that Brianne’s every single
need was met. We all miss her.
We
are still quite lost without her physical presence, but knowing she is
with the angels in heaven, no longer struggling with this debilitating
disease, we manage to find some peace and solace. We have many photographs
and incredible memories of her life to keep us reminded of her sweet spirit.
Losing a child is the most difficult experience I believe one can encounter
in a lifetime. My heart goes out to all parents who have experienced a
similar loss.
We have been blessed with a very loving family and incredible friends
to help us through this extremely difficult time. We hope this story inspires
you the way Brianne inspired all of her family. My life is forever changed
having raised this incredible child. As her mom, I am so very proud of
her. It is a promise I made to Brianne during her final days, to keep
her incredible spirit and legacy alive that continues to give me strength
and determination to make a difference. It is my wish to keep this promise
through sharing her story of grace, courage and dignity with the world,
in hopes to help someone else who may be struggling with life and all
that life may challenge us with. It has been my experience through the
responses I have had to this website, that Brianne’s life has touched
thousands of people. I hope in reading the next few pages, you will understand
why.
”Brianne’s
Story” is a journal I kept during Brianne’s life,
while she was being severely affected by a mysterious, undiagnosed condition
that took milestones and abilities away from her one by one. We learned
a short nine months before her passing that Brianne had symptoms of a
white matter disease and we are hoping in the future to find out more
about this disease that is turning out to be more common than first thought.
Brianne’s condition remained a mystery even after her passing. It
is thought she may have had a mitochondrial disease which can cause white
matter demyelination. Still many questions left unanswered regarding her
illness, which as a parent is difficult to accept.
If
you have any comments or questions after reading Brianne’s story,
please email me at the address available in the Link column named “Contact
Us”, and I will be pleased to do my best to respond with any information
that may be of help to you if that is what you require.
I would also invite you all to sign Brianne’s Guestbook also provided
in the Link Column. It is always interesting to know who is visiting our
site, so please sign and share any comments you may have.
Briannesleapofhope.org
copyright 2005
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"Brianne's LEAP of Hope is dedicated to raising public awareness into rare, childhood, metabolic diseases, especially those that affect the white matter of the brain." |
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