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ZebraStrong

My name is Sarah I was diagnosed with CVID about 4 years ago. My doctors think I was born with it and it was activated… Continue reading ZebraStrong

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We Decided to Swim

Here is the link to my blog which is the story of raising a child in Northern Ontario with a physical disability.  https://link.medium.com/t1J2D8G9EU Thank you… Continue reading We Decided to Swim

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Life with lissencephaly

Zion is 9 months old and he has been diagnosed with lissencephaly and microcephaly. He has a small head and smooth brain. He first got… Continue reading Life with lissencephaly

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My rare disease may take away my strength but it can’t take away my spirit…

(Please note that my experiences are my own and are not representative of all GNEM patients). GNE myopathy (GNEM) is an ultra-rare neuromuscular disease. GNEM… Continue reading My rare disease may take away my strength but it can’t take away my spirit…

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Tarsha’s Story

From June 2018 I realised something was “just not right”. I was overwhelmed with the feeling that something was wrong even though I couldn’t pinpoint… Continue reading Tarsha’s Story

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Josiah’s MPS3 Journey

Hello, my name is Josiah David O’Neal! I am just ten years old! A little over a year ago I was diagnosed with MPS111A/Sanfilippo Syndrome Type… Continue reading Josiah’s MPS3 Journey

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Hope Floats

I was diagnosed with Osteonecrosis a rare bone disease over one year ago.  I have this disease in my hip and now it has continued… Continue reading Hope Floats

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Life with Panhypopituitarism

I am Samriddhi and I suffer from Congenital Panhypopituitarism.(CPHP) Congenital means by birth. Pan means all. Hypo means less or absent. So panhypopituitarism means less or… Continue reading Life with Panhypopituitarism

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AKU-patients in Slovakia need attention

Anna I am an AKU-patient from Slovakia and a participant of SONIA2 clinical trial (age 61). I was very happy and healthier with nitisinon during SONIA2… Continue reading AKU-patients in Slovakia need attention

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