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The 4th Annual Paediatric Palliative Care Symposium Tuesday, October 30, 2012 Toronto Sick Chidrens Hospital Aicardi Syndrome Family Conference 2012 The Aicardi Syndrome family conferences are a unique opportunity for families to come together to learn more about the syndrome, meet other Aicardi families, exchange ideas,...
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On March 18th, 2010 Neil & Stephanie Pasher welcomed Sloane Pasher to the family. Early on Sloane was diagnosed with Aicardi Syndrome, a disorder that poses severe developmental challenges and often brings on frequent and difficult to treat seizures. Sloane has a number of medical challenges that are all assoctiated with...
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A Father’s Blog is meant to share my experiences of raising a daughter with special needs. As difficult as it may be at times, it is also the most joyous and fulfilling experience. Special needs children bring such an innocence to life and make you reassess what life’s meaning is truly...
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Often times when parents who are facing a diagnosis of any kind they jump online to learn more about what might lie ahead. However, as the internet contains both good and bad information, parents end up with more questions than answers and the result is that they feel more scared and alone then ever. If you are searching this...
The best and most beautiful things in the world cannot be seen or even touched. They must be felt within the heart.
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Blogging is a difficult thing for me. I'm not much of a writer but find that it helps me deal with the situations at hand. I urge you to comment so that we can get a dialogue going in an effort to discuss things that aren't normally talked about.
About Sloane
On March 18th, 2010 Neil & Stephanie Pasher welcomed Sloane Pasher to the family. Early on Sloane was diagnosed with Aicardi Syndrome, a disorder that poses severe developmental challenges and often brings on frequent and difficult to treat seizures.
Sloane has a number of medical challenges that are all assoctiated with Aicardi Syndrome. Sloane does possess the triad of symptoms that clinically diagnosis her with Aicardi Syndrome.
- Missing her corpus collosum – the part of the brain that connects the left and the right hemispheres.
- Lacunea on her eyes – holes in her retina.
- Difficult to treat seiures.
Some of Sloanes additional challenges are as follows:
- Microophthalmia – small eyes, one of which is so small that it has been replaced with a prothesis (can you guess which one).
- Coloboma – malformation of the retina.
- Scoliosis – curviture of the spine.
- Spider vertebrae – disks are in the shape of butterflies.
- Microcephaly – severely reduced circumferance of her cranium.
Sloane has two older sisters that love and adore her. Avery and Kinleigh are twin four year olds that already understand the great challenges of their little sister and help in every way they can to make Sloane’s life as full as it can possibly can be.
Read MoreRecent Blog Posts
January 31, 2013 |
Comments Field Fixed
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July 11, 2011 |
Speak Up!
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