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My life with Degenerative Spino-Cerebellar Ataxia

My name is Chris Phillips, I am 39 years old and I live in Worcester, South Africa. I was diagnosed with Degenerative Spino-Cerebellar Ataxia 3… Continue reading My life with Degenerative Spino-Cerebellar Ataxia

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With Faith Come Hope!

Our family joke was always “if we didn’t have bad luck, we wouldn’t have any luck at all.” We would all laugh at that statement… Continue reading With Faith Come Hope!

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1 of 13…

My 20 month old daughter Clara, who is the light of our world, was recently diagnosed with Progressive Myoclonic Epilepsy 6- a recessively inherited genetic… Continue reading 1 of 13…

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Fight The Itch, Save A Life

What is ICP? Let me tell you about my little boy… In December 2013 I had a really vivid dream that I gave birth to… Continue reading Fight The Itch, Save A Life

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Moyamoya Awareness

I’ve lived with this rare disease, moyamoya, since age 18. I’m almost 22 now. This disease needs more awareness. Many don’t know they have it… Continue reading Moyamoya Awareness

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CDKL5*TeamRylee*

Hi there! I am Rylee and I’m 9 (almost 10)years old & I live in OHIO. I was born with a very rare genetic mutation… Continue reading CDKL5*TeamRylee*

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Aorta Dissection

I was on my way to move from Copenhagen ind Denmark to Edinburgh in Scotland. The day before departure, I felt a terrible pain in… Continue reading Aorta Dissection

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Stephen’s Hirschsprung’s Journey

Hirschsprung’s disease! Heard of it? No neither had we until our son was diagnosed with it. It is a rare condition that affects 1 in… Continue reading Stephen’s Hirschsprung’s Journey

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My son Noah

Noah is 17 years old with Morquios Syndrome Type A. He’s had numerous surgeries since 2000. Noah will graduate

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