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Doctors / Nurses / Therapists
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With Canavan a gene mutation prevents the production of an enzyme called Aspartoacyclase. Without this enzyme an acid called N-Acetylaspartate builds up and starts destroying the Myelin. Myelin s the central nervous system's white matter. The Myelin forms a protective coating around every nerve in the brain and spinal cord, to ensure that nerve impulses are properly transmitted from one part of the body to another.
The destruction of myelin leaves Canavan Children incapable of performing the simplest functions: holding up their head, sitting, crawling, and ever saying "I LOVE YOU MOMMY". There is HOPE in Experimental Gene Therapy. My therapist comes to my house three times a week to play with me too. They say it is time to work but it is too much fun to call it work.
Brianna's first adventure for her Gene Therapy was to Children's Hospital of Philadelphia (CHOPS), We first went there in the winter of 1996 for her MRI, and MR Spectroscopy. We have been back about 12 times since then for those tests. We went to Yale University in New Haven Connecticut March of 1998 where we spent two weeks there for her Gene Therapy Transplant to take place. We went back for tests about 7 times since that was done. While we were there we stayed at the Ronald McDonald house in CT.
We have taken numerous means of transportation: private 4-seater planes, regular airplanes, and trains. We look at the time we have to get there and what is cheaper and will get us there in time.
Brianna sees a number of specialist. Dr. Zaheer Hassan MD for neurology, Dr. Rita Steffen for gasterology, Dr. James Horner for pediatric endocrinology, Dr. Debbie Horner dietician, Dr. Greg Derodes OD for glasses, Dr. Julie Miller orthopedic specialist, Dr. David Wassil DO family doc., Dr. Julius Toth DDS for dentistry. We receive PT & OT through Heritage Health Care we are currently , awaiting our speech therapist to come back from maternity leave. Also during the school year we receive PT & OT through the school. Her schooling and therapy's are all done at home. Schooling is through the Gibsonburg School district. We are still looking for a nurse through A toZ Health Care. We get most of her medical supplies through APDS Health Supplies, Medication through Gibsonburg Pharmacy. And Medical Equipment through National Seating and Mobility.
Over the years we have met a great number of people in the medical field that have helped Brianna in one way or another. Some of the people we have met at Yale University are Dr. Leone who is the Assistant professor of Neuro-surgery and main person involved in the research going on. She is now located at Jefferson Medical College in Philadelphia where our next gene treatment will take place. Elizabeth Cherniske genetic counselor, Charles Duncan professor & chief pediatric neuro-surgeon, He did the actual operation on implanting the shunt in Brianna's head. Barbara Teague research coordinator, Janet Durrans, who took the pictures there for the Toledo Blade. And a great staff of people at the McDonald house. During these trips I have been blessed with meeting some of the greatest families.
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