Fuel Flame’s Fight: Light her road to recovery.
Waikato
Flame is a 33yo loving wife and mother of four to: Kees (13), Pierce (12), Mercer (7), and Sanne (4).
Once active and working as an education assistant/disability support worker, she had goals to pursue a career as a school councillor or psychologist. Unfortunately her health has drastically declined, stopping her in her tracks.
After years of being dismissed by the public health system and being forced to seek help privately, she has finally received a diagnosis!
Classical Ehlers-Danlos syndrome (cEDS), a genetic connective tissue disorder affecting her body severely. She also suffers from multiple comorbidities including: Pelvic Congestion Syndrome (she has had surgery for twice) and rare Abdominal Vascular Compression Syndromes (AVCS): A severe form of Nutcracker Syndrome with renal vein interaction, May-Thurner Syndrome, and Median Arcuate Ligament Syndrome.
Due to limited knowledge of EDS and AVCS in New Zealand, she cannot access essential medical treatments.
She endures debilitating abdominal and pelvic pain, fatigue, migraines, nausea, dizziness. The pain and inability to eat has led to a hospital admission and significant weight loss.
Her quality of life has deteriorated so drastically that she has had to stop studying and is often bedridden.
The only viable option is surgery in Germany, which comes with substantial costs.
For her full story, please enter:
"Fuel Flame’s Fight: Light her road to recovery.” (In the Facebook search bar).
I am Flame’s best friend of 14yrs and a trusted confidant in her close circle.
Anything raised is going towards medical costs in New Zealand, surgery in Germany, immediate after-care overseas, travel costs, scans, medications and ongoing care. Any shortfall we don't cover will be supplemented by exploring other options.
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