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Brianne's LEAP (Leukodystrophy Education and Awareness Project) of Hope is a Non-profit Organization originating in Calgary, Alberta, Canada and founded in April 2003 by Patti Zabot, mother of Brianne Zabot. “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.” "Who is Brianne Zabot?" Brianne Paige is our youngest daughter and sister to Kayla. Brianne was born a very healthy baby May 5, 1998. She achieved all baby milestones on time if not early. At eleven months old, one of her arms started to jerk uncontrollably, without any reason as to why this would happen. I took her to a medical clinic, and upon examination it was discovered her leg was also twitching. She was taken to The Alberta Children's Hospital ER. Many medications were administered in attempts to stop the jerking; various tests were taken to try to find a cause to this seizure like episode that was affecting our healthy little girl. After a two day stay in ICU the jerking stopped and we were sent home, (we were told she may have a partial seizure disorder). She was followed by a hospital neurologist a month later, she seemed to be fine. We were certain this entire nightmare was behind us. Unfortunately, nine months later, symptoms returned but only worse. The jerking had taken on a whole new turn and was now throughout her entire body. Brianne spent a lot of time at the hospital for more testing, to also try to control the jerking (which was called myoclonus) and to find out what was going wrong in Brianne's little body. February 14, 2000, Brianne's dad found her unconscious in the middle of the night, very close to taking her last breath while having her first tonic-clonic seizure which was brought on by a fever. Five weeks in hospital left our family scared beyond belief, without any further answers to what was wrong. Brianne was now unable to walk or sit unassisted. She was like a floppy little doll as her muscle tone was extremely low. Brianne sadly began to lose her previously acquired skills and although she would have periods of stabilization, she never was able to regain what she had lost. Since the February 2000 event, Brianne had many admissions to hospital with status type symptoms and varying medical issues that arose continuously. April 1, 2002, following her annual February relapse, and three years after the initial onset, an MRI report indicated Brianne was suffering from a very rare progressive, neuro-degenerative condition called Leukodystrophy. This is a rare disease which affects the white matter of the brain. Her myelin, which is the insulating layer covering the nerves of the Central Nervous System, was slowly degenerating causing loss of motor function and paralysis. Brianne tested negative for the known types of leukodystrophy, so she was considered to have an unknown form (which apparently is the case 30-50 percent of the time). We were told that Brianne's life could end within months, perhaps years, but she would most likely not live to see her tenth birthday. She was one month away from her fourth birthday. We had to find a way to save her life; this whole situation couldn't be true. While in obvious shock from this horrible news, we were blessed with incredible support and love as we tried to comprehend this information no parent should ever have to hear. We were sent on a wonderful trip to Disneyland, CA with The Children's Wish Foundation of Canada in May 2002, one month after we received Brianne's terminal diagnosis. This trip, although Brianne was very weak physically, was simply incredible and provided our family with many bittersweet memories of our beautiful daughter that will forever remain invaluable to us. Brianne's body began to show severe signs of dysfunction with her autonomic nervous system. She developed her first pneumonia in October of 2002 and then in January 2003, a second pneumonia developed. She had a more difficult time recovering the second time. February 12th, 2003 Brianne lost her sight after two very strong and wonderful days at school where she loved to be (she was in Jr. Kindergarten) and once again, our girl was courageously fighting for her life. She spent the next ten days surrounded by her family and friends as we prayed for a miracle. Brianne's body was tired, she had given her all and it was clearly time for her to return home to God where there would be no more pain nor suffering. Brianne passed away while listening to the music ("I will Always Return"- from Bryan Adams) from her favorite movie "Spirit", with us by her side; at the Alberta Children's Hospital in the morning of February 22, 2003. She will forever remain in our hearts, as her legacy will live on through the memories we have created and our determination to make a difference in the lives of others. Brianne is our inspiration and as a family and community, we have come to know more about life and unconditional love that one could ever imagine as a result of Brianne's all too short but very precious life.
Briannesleapofhope.org copyright 2005 |
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