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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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.