Our mission is to provide a much needed support network and information point to families with the diagnosis of what is often referred to as an orphan disease, Minicore Myopathy. Growing up, the people I got intouch with (via the wonderful portal known as the internet) and I, struggled to come to terms that there was just nothing out there for people with this diagnosis to go to since it's first discovery in 1971 to 2011, when we made The Minicore Project.
"My parents were told on the day of receiving the diagnosis to NOT under any terms look for information on the condition on the internet. Do not read medical documents from the local library. All my parents were told in 1991 was it was a non-progressive illness (as was thought back then) and to go home and carry on as normal. Devastated at the diagnosis and frustrated at the lack of information and care shown from the Neurologist, my Dad despite the warning went to the city library the next day. Desperate to know all there was to know to make my life easier, he asked the librarian to print off any medical literature she could find on the condition and even paid to have access to those articles. He came home that afternoon with tears running down his face as he handed my Mum 12 pages of information the librarian found. He had read some before returning home and confessed to my Mum, the Neurologist was right to tell us NOT to look. He begged my Mum not to read them. Her gut instinct told her she must to know what my future held. My Dad had to go back out to buy a medical dictionary to understand the terminology as it was not meant for patients or their families. As they thumbed it over that night, they were left shaken. My Mum told me this story when I was 13, around the time I started asking what they knew about Minicore Myopathy. She was completely honest with me and said when she read those 12 pages, saw the photos of paper thin children, with twisted backs and other deformities she thought I was going to turn into a MONSTER. The secondary condition of Scoliosis particularly scared them, then I understood why my parents crumbled when a Jr. Dr noticed I'd begun developing Scoliosis at age 8. Their minds had gone back to those horrifying images from the medical literature in the early 90s,"
- Fiona Anderson (28yrs), Manchester England UK
"When my daughter Karlia was born and later diagnosed with Minicore Myopathy at age 2, Drs told me she was going to die. Everytime she's gone into hospital with a Chest Infection they encourage me to just "let her go." Yet every Dr we see has never heard of it, I am the one that has to educate them. I am the one that is fighting for my daughter, who deserves to LIVE. There was no support for her or information. Nobody knew anything. I've learnt that parents of children with Minicore become the experts, that gut instinct can save them when Drs aren't doing enough. I've lost count the number of times I've told Drs what my daughter needs when she's admitted into hospital. Everything Karlia needs and deserves is a fight here in Australia. Karlia has already defied the odds. She's now 5 years old. Drs may still be trying to give up on her, but I NEVER will. And now I've found The Minicore Project I have proof that people with this diagnosis can live happy, active lives given the right knowledge and support."
- Coraley Craig (Mum to Karlia age 8), Mackay Australia
It's stories like these we strive our hardest to make sure doesn't happen to future families. Nobody with a rare condition should be left to deal with it alone. Seeing as there was nothing in place for families like us, we've pulled our knowledge, experiences and power together to be there for families with this diagnosis so they never have to go through what we did. The future doesn't have to be bleak with Minicore. Knowledge is power, support is strength and nomatter the attitude of Drs. They aren't the ones living with the condition, we are. Living being the keyword :)