Giving birth to a Blood Angel

When I heard my sons diagnoses with Severe Hemophilia A for the first time my world turned upside down, backwards, and twisted. I was young,… Continue reading Giving birth to a Blood Angel

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Sam Berns

Sam Berns, the teenager who aged ahead of time, died last week after battling for 17 years with an incredibly rare genetic condition. The boy… Continue reading Sam Berns

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Hope for Jackie

It began in September 2010, I was waking with my friend to the gas station. On our way back home I noticed I began getting… Continue reading Hope for Jackie

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Cameron’s Story

During my second ultrasound, I was told that I was having a baby girl. As she grew and I watched my body change, I often… Continue reading Cameron’s Story

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First in my Country

I was diagnosed with Collagonous Gastritis when I was 9. I was the first person in Australia to be diagnosed with it. With Collagonous Gastritis… Continue reading First in my Country

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Takayasus Strong

In December 2003 I was diagnosed with a rare disease called Takayasus Arteritis. Takayasu’s arteritis (tah-kah-YAH-sooz ahr-tuh-RIE-tis) is a rare type of vasculitis, a group… Continue reading Takayasus Strong

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Hypoparathyroidism over 44 years

It only took 43 years for me to speak to somebody that has the same disorder with which I was born. That is – by… Continue reading Hypoparathyroidism over 44 years

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Carnitine-acylcarnitine translocase deficiency

My son, Gage, was born on July 10th, 2008. Gage has been diagnosed with a rare genetic disorder called Carnitine-acylcarnitine translocase deficiency (CACT), which prevents… Continue reading Carnitine-acylcarnitine translocase deficiency

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Sam is 4 years old and has been fighting Cystic Fibrosis since birth. At 3 months old, he was hospitalized with flu, pseudomonas, and a… Continue reading #SAMSTRONG

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