livingwithleukodystrophy.blogspot.com
Living with Sandhoff Disease: October 2010
http://livingwithleukodystrophy.blogspot.com/2010_10_01_archive.html
Living with Sandhoff Disease. Artemissia's fight against Sandhoff disease using a new treatment developed to treat Tay-Sachs and Sandhoff was going well, the danger came from the damage Sandhoff caused prior to diagnosis and treatment. Wednesday, October 27, 2010. Artemissia is showing more signs of awareness and movement as the Phenobarbitone withdrawal continues. So far we have had no signs of seizures or discomfort due to the decrease in her Pheno dose. They are here to help others, stop the suffering...
livingwithleukodystrophy.blogspot.com
Living with Sandhoff Disease: January 2011
http://livingwithleukodystrophy.blogspot.com/2011_01_01_archive.html
Living with Sandhoff Disease. Artemissia's fight against Sandhoff disease using a new treatment developed to treat Tay-Sachs and Sandhoff was going well, the danger came from the damage Sandhoff caused prior to diagnosis and treatment. Thursday, January 27, 2011. We will always miss her, little Artemissia you taught us so much. I am still here. I am still real. You are all dear. Your hearts to heal. Labels: I will always be here for you to help others-Dad. Thursday, January 13, 2011. Little respite from ...
tsapo.org
About Tay-Sachs - Tay-Sachs Awareness and Prevention
http://www.tsapo.org/tay-sachs-disease.html
How To Get Tested. Medicines for your Child. Dispelling the Myths About Tay-Sachs. Cure and Action for Tay-Sachs Foundation. And the Tay-Sachs Gene Therapy Consortium. Tay-Sachs is caused by. Is designed to identify and test individuals who are direct descendents of Tay-Sachs carriers. If you have a child who has infantile Tay-Sachs and would like to be part of our program, please visit our Genealogical Carrier Testing. Tab to request information. Help us make our website better!
livingwithleukodystrophy.blogspot.com
Living with Sandhoff Disease: April 2012
http://livingwithleukodystrophy.blogspot.com/2012_04_01_archive.html
Living with Sandhoff Disease. Artemissia's fight against Sandhoff disease using a new treatment developed to treat Tay-Sachs and Sandhoff was going well, the danger came from the damage Sandhoff caused prior to diagnosis and treatment. Sunday, April 29, 2012. Our slice of heaven. This last few months has been a blur, after Artemissia's 4th I just switched off the world. Only staying in touch occassionally, for those that needed easily found. Time to Join the world again. Subscribe to: Posts (Atom). Chann...
livingwithleukodystrophy.blogspot.com
Living with Sandhoff Disease: Artemissia like every other Australian still counts!
http://livingwithleukodystrophy.blogspot.com/2011/07/artemissia-like-every-other-australian.html
Living with Sandhoff Disease. Artemissia's fight against Sandhoff disease using a new treatment developed to treat Tay-Sachs and Sandhoff was going well, the danger came from the damage Sandhoff caused prior to diagnosis and treatment. Wednesday, July 27, 2011. Artemissia like every other Australian still counts! The NDIS will make it easier for disabled, aged, palliative and sick people to access essential care, support, equipment, training and much needed respite. The proposed NDIS would fund long-term...
livingwithleukodystrophy.blogspot.com
Living with Sandhoff Disease: April 2011
http://livingwithleukodystrophy.blogspot.com/2011_04_01_archive.html
Living with Sandhoff Disease. Artemissia's fight against Sandhoff disease using a new treatment developed to treat Tay-Sachs and Sandhoff was going well, the danger came from the damage Sandhoff caused prior to diagnosis and treatment. Friday, April 29, 2011. Fun and music in the breeze. Labels: Your sweet melodies - Dad. Thursday, April 28, 2011. You light my world - Artemissia. Wednesday, April 27, 2011. Labels: My mum is special - Artemissia. Baby please stop cryin'. Even when the storm hit again I wa...
livingwithleukodystrophy.blogspot.com
Living with Sandhoff Disease: November 2010
http://livingwithleukodystrophy.blogspot.com/2010_11_01_archive.html
Living with Sandhoff Disease. Artemissia's fight against Sandhoff disease using a new treatment developed to treat Tay-Sachs and Sandhoff was going well, the danger came from the damage Sandhoff caused prior to diagnosis and treatment. Wednesday, November 24, 2010. HAPPY BIRTHDAY AUNTY JULIA. Dear Aunty Julia, Honey and Poppy and I have been having a little birthday party for you. Dad got us all some of his frangipani flowers so we could all look beautiful for you. Wednesday, November 10, 2010. It's been...
livingwithleukodystrophy.blogspot.com
Living with Sandhoff Disease: Artemissia's 4th Birthday
http://livingwithleukodystrophy.blogspot.com/2011/09/artemissias-4th-birthday.html
Living with Sandhoff Disease. Artemissia's fight against Sandhoff disease using a new treatment developed to treat Tay-Sachs and Sandhoff was going well, the danger came from the damage Sandhoff caused prior to diagnosis and treatment. Thursday, September 15, 2011. A perfect birthday layout for our beautiful princess. See Artemissia's new frangipani bag, handmade with lotsa love by aunty Julia so we can carry all Artemissia's toys, flowers and very special book. We are blessed by our special angels.
livingwithleukodystrophy.blogspot.com
Living with Sandhoff Disease: Nothing To Lose And Everything To Gain
http://livingwithleukodystrophy.blogspot.com/2011/07/nothing-to-lose-and-everything-to-gain.html
Living with Sandhoff Disease. Artemissia's fight against Sandhoff disease using a new treatment developed to treat Tay-Sachs and Sandhoff was going well, the danger came from the damage Sandhoff caused prior to diagnosis and treatment. Wednesday, July 13, 2011. Nothing To Lose And Everything To Gain. There is a drug called Pyrimethamine. If anything can make a difference to these children of ours then it is worth everything. There are other attachments are from the World Lysosomal Disease Conference held...
