Life Gone AWry

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Life Gone AWry Sharing our World, crazy life and complex Health Challenges.

Camping. It is something that many individuals & families enjoy throughout the year; Whether it be in your own backyard...
29/06/2023

Camping. It is something that many individuals & families enjoy throughout the year; Whether it be in your own backyard, Campground, Backwoods, Backpacking or Road Tripping. Now when you live with Disabilities the how you enjoy Camping is just a little different. From Pre-planning, additional equipment, meal prep, ensuring accessibility of the camping space & accommodations, to carefully following the weather forecast, and even ensuring you have a Emergency exit plan. What helps you or your Family when going camping?

*Photo of trees, a tent, sunshine over a lake with a picnic table and fire going.

Better late than not at all. 😘 3 of our family members have Rare Chromosome duplications. The duplications are associa...
25/06/2023

Better late than not at all. 😘 3 of our family members have Rare Chromosome duplications. The duplications are associated with Urinary tract defects, heart defects, Autism, ADHD, learning disabilities, location of our ears/eyes to name a few things. Along our Medical journey discovering these duplications helped guide the diagnostic process for Autism, ADHD, learning disabilities, urinary tract & heart defects. Unique's Chromo Handbooks provided information on what to look for. They are an amazing organization based in the UK.



The Education system in North America was designed and created just over 200 years ago. It was created at a time when c...
23/06/2023

The Education system in North America was designed and created just over 200 years ago. It was created at a time when children needed to learn to work in Factories on Assembly lines. Or just to have the most basic of reading & writing skills. Those who could not manage in the System worked on family Farms, & other businesses. Now the system is changing, I have seen changes in the past 13 years as my eldest child as completed High School and successfully Graduated. But more needs to change so every child has access to Education. Below is my letter to the Teachers who both helped (Thank you!!!!) and hindered my child's education over the past 13 years.

EDS aka Ehlers Danlos Syndrome affects the body's Collagen. Collagen is a protein the body produces (it accounts for up...
04/05/2023

EDS aka Ehlers Danlos Syndrome affects the body's Collagen. Collagen is a protein the body produces (it accounts for up to 35% of the whole body protein content); it is used to make connective tissue found in bones, skin, tendons, and muscles. With EDS the collagen is defective, which can & does lead to skin fragility, skin stretchiness, joint instability, joint dislocations, stretchy ligaments, weak blood vessels, issues with organs and poor healing to name some of the impacts on the body; what it impacts varies between the 13 types of EDS and the individual.


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