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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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Neurofibromatosis: my diagnosis, not my definition

When Jesse was born, we did not know of the challenges he would face in his life. By the time he was 3 months old,… Continue reading Neurofibromatosis: my diagnosis, not my definition

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Inspiring Imogen

My pregnancy with my daughter was just like any other with morning sickness and cravings. It all changed at 36 weeks pregnant. I went for… Continue reading Inspiring Imogen

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Duputreyn’s Contracture

My name is Duncan from Scotland and I’m 50 years old. I live an active and healthy lifestyle and have dupuytren’s contracture (dc) in both… Continue reading Duputreyn’s Contracture

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Josie’s story-ARSACS

At the age of 5 we discovered that there was something different about the way Josie would walk or how she annunciated her words. Teachers… Continue reading Josie’s story-ARSACS

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