EDS causes my joints to partially dislocate, multiple times a day. As it has progressed, my spine, jaw, shoulders, ribs, and extremities were staying dislocated for days at a time. It also affects my GI tract, causing over 60 food sensitivities; staying healthy is expensive and food prep is challenging because of my condition.

Basic self-care is like trying to keep a stringed puppet moving. The strings represent my muscles and ligaments trying to keep my spine, ribs, shoulders, knees and ankles from partially dislocating all day long. Other symptoms of EDS include Vagus Nerve disfunction, which affects my senses, digestion, muscles, and mental health.

In 2017, doctors told my husband and I, that it would be nearly impossible for us to have children. However, in 2019, we were blessed to have our son, Sebastian. Unfortunately, my condition doesn’t allow me the freedom to be the active mom I yearn to be.

Treatment:

After years of research, countless doctor and therapy appointments, we learned about Comprehensive Prolotherapy, the only treatment that can cure many symptoms of hEDS. My condition has caused such degeneration, that we had no choice but to make this treatment an immediate priority.

In December 2020, I traveled from our home in Charlotte, NC, to Caring Medical in Fort Myers, FL; I went for 2.5 months of Comprehensive Prolotherapy by Dr. Ross Hauser. He has been helping EDS patients from all over the world for 28 years but treatment is not covered by insurance. Aside from regenerative medicine therapies, extensive physical and occupational therapy are required for my rehabilitation; travel expenses, food, and housing are all out of pocket as well.

My amazing husband, Jose, has been supportive through everything and is a true provider for our family. And my in-laws have helped immensely with caring for our son. But as any family facing health challenges knows, funds for medical expenses do not come easy. We did not want to ask for help but our closest friends convinced us to start a fundraising campaign to help with the costs.

After 2.5 months of prolotherapy, at $11,000 per treatment (for multiple joints), we have exhausted all of our financial resources. We have accumulated over $60,000 in debt and desperately need help to continue treatment.

How donations will be used:

Donations to Help Hope Live will help get me to the next treatment and hopefully to include treatment for my slipping ribs syndrome, shoulders, and knees.

My desire is to regain independence to raise my baby boy, become active enough to give back to my community, and raise awareness of EDS and the types of lifesaving treatments that can help others.

We’ve chosen to fundraise for Help Hope Live because they assure fiscal accountability of funds raised and tax deductibility for contributors. Donations will be used to pay for and/ or reimburse approved medical and related expenses.

To make a tax-deductible donation to this fundraising campaign, click on the Give button. For more information, please contact Help Hope Live at 800.642.8399.

For more about Daisy’s battle with hEDS, please check back for further updates.

Thank you for your support!