<div>I am 38 years old living with several complex and debilitating conditions. 
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<div>Ehlers Danlos Syndrome (EDS), Severe Gastroparesis, Fibromyalgia, and intestinal dysmotility, plus an array of other comorbidities —all of which have dramatically impacted my health, independence, and quality of life.
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<div>Due to severe gastrointestinal paralysis, my stomach no longer works properly. I am now jejunostomy tube fed, meaning all of my nutrition has to be delivered directly into my small intestine. This is not optional—it is the only way I can safely receive the nutrients I need to stay alive. Jejunostomy feeding comes with ongoing costs for formula, tubing, medical equipment, pump supplies, dressings, and frequent medical appointments. These expenses add up quickly and are not fully subsidized.
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<div>My digestive system is also affected by intestinal dysmotility, where the muscles of my intestines struggle to move food along. This can lead to intestinal failure, severe pain, malabsorption, dehydration, dangerous weight loss, and repeated hospital admissions. Daily life becomes a constant battle just to maintain basic bodily functions most people never have to think about.
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<div>Much of this stems from Ehlers–Danlos Syndrome, a genetic connective tissue disorder. Because connective tissue holds the body together, EDS can affect every organ system. In my case, it contributes to my gastrointestinal system slowing down and shutting down, joint instability, chronic pain, fatigue, and problems with autonomic function. Over time, EDS can cause multiple organs to become weak or dysfunctional, leading to a cascade of medical challenges that require continuous management.
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<div>Despite the severity of my conditions, I currently have no NDIS funding or financial support, leaving me to carry the full burden of these medical costs alone. The reality is that these illnesses are lifelong, progressive, and extremely expensive to manage. I am doing everything I can to stay stable, but I cannot do it without help.
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<div>Your donation—no matter the amount—will go directly toward essential medical supplies, feeding formula, treatment costs, mobility and daily living needs, and ongoing care that keeps me safe and nourished. Even a share of this fundraiser helps more than you know.
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<div>Thank you for taking the time to read my story and for offering kindness during an incredibly difficult chapter of my life. Your support truly means the world.
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<div>Unfortunately not everyone gets saved and not everyone survives.
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Kylie Sibley

Anonymous

amanda baz

Arran Downey

Melissa Blair

Help Support my Fight for medical stability ♿️

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Platform is iOS

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Active Fundraiser - Smart Default Cadence

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Person ids

United States (US) users

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Charities allow to be claimed unclaimed (PRD)

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PYMK has donors

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Help Support my Fight for medical stability ♿️

Still $7,745 to go. Help us build momentum.