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MAYO Clinic Expenses: Manitoba Canada, to Florida, U.S.A

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I am raising funds for a close friend who is a colleague, and mother of two beautiful children. While both of her children have health concerns, her daughter Emma has been having an extremely challenging two years.

Emma is a 19-year-old, 2Spirit, Michif artist from Red River. She lives south of Winnipeg with her family where she picks medicines that grow along the road and cares for her many rescue animals. Emma is a passionate member of the 2Spirit community, is always willing to be of service to others, and stands up against injustice without hesitation. An incredible artist, she works with diverse mediums including paint, porcelain, wood, beads and bones.

Emma also suffers from Ehlers-Danlos Syndromes (EDS), and she and her family need our help.

Emma’s Story

As a child, Emma was very active but by age 12, she experienced a rapid decline in her health. Despite our best efforts to manage her symptoms, and get her the medical help she needed, Emma’s condition continued to deteriorate.
• She began to have severe reactions to the sun, to water, most foods and became emaciated from constant nausea and vomiting.
• Her immune system was compromised, and she was plagued by infections that didn’t respond well to antibiotics.
• Her joints became unstable resulting in increasingly severe dislocations of her large joints and small bones.

In the fall of 2022, Emma’s lungs began “leaking” air into her chest cavity (Pneumomediastinum) and was told there was nothing to do but wait to see if both her lungs would collapse (Pneumothorax).
After years of advocating and pleading, we were finally able to get a letter of referral to Dr. Dacre Knight, one of the very few EDS specialists in the world.

At the MAYO clinic in Jacksonville Florida, Emma received multiple diagnoses that she had been unable to attain or have confirmed in Manitoba. It was an incredible experience to have a Dr. validate her experience. Rare symptoms like not being able to shower, drink water or be in the sun without developing hives (even inside her throat) are often viewed with skepticism by practitioners who do not have expertise with her condition.

Though there is no cure for her condition, this team is confident they can improve Emma’s quality of life with treatments that will reduce her chronic pain without drug dependency. On June 30th Emma is returning to Jacksonville for 27 days.

As Emma and her mom will be travelling from Winnipeg Manitoba to Jacksonville Florida for 27 days, there are considerable costs being absorbed by the family. Donations will go towards supporting the family's expenses both at home and while on the road, so that mom and Emma can focus on Emma's treatments and care.

Please help us take some of the financial burden off this most generous and giving family!

Thank-you!


Here is a little more about EDS:

Hypermobility spectrum disorder (HSD), Ehlers-Danlos syndromes (EDS): are a group of rare genetic conditions that affect the body’s connective tissues which provide support in skin, tendons, ligaments, blood vessels, internal organs and bones. Faults in certain genes that make connective tissue weaker, can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling and life threatening.

Donations 

  • Brian Connelly
    • $200
    • 8 mos
  • Candice Arthur
    • $250
    • 8 mos
  • Gillian Schofield
    • $100
    • 8 mos
  • John Johnson
    • $100
    • 8 mos
  • Jacqueline Johnson
    • $100
    • 8 mos

Organizer and beneficiary

Jerilyn Ducharme
Organizer
St Germain South, MB
Denise Tardiff
Beneficiary

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