Bernadette Gornie

Bernadette is a sixty-year-old professional who was born with a rare genetic disease called Ehlers-Danlos.The genetic disease was not recognized or named until well after her birth, so she started life as any other newborn and continued through her early life the same as her family, friends, and extended family.EDS is a fairly rare genetic disease that can present in many forms. One consistent commonality is having hypermobility from defective connective tissues. Connective tissue is found in joints, eyes and most organs. Along with the connective tissue issues, Bernadette has several comorbidities such as excessive dynamic airway collapse (EDAC), the inability respond to changes in termperature, mast cell activation syndrome (MCAS) which significantly limits what foods she can safely eat, her ability to breathe, reactions to environmental pollutants, chemicals, airborne fumes to the scent of perfumes.Before EDSBefore EDS, Bernadette loved life and the rhythm being outdoors gave her. She always kept her eye on fitness, healthy eating, and living with purpose. For many years she practiced yoga, cycled, hiked, trained regularly with a retired marine drill sergeant, rock climbed, traveled, shuttled nephews between sporting activities and gave back to others. As an Advanced Master Gardener she helped develope and maintain a community teaching garden. Embracing adventure and altruism she spent periods of time over many years doing humanitarian work in some of the most remote and poor regions of the Peruvian rainforest.Bernadette had a strong work ethic that energized her to work two or three jobs to finish an undergraduate degree in design from a top three art college in four years. Years later that same determination earned her a place on the Dean’s List for her MBA accomplishments, and several prestigious executive certifications.Her first corporate job was working for an encyclopedia company where she developed many long-lasting friendships. By mid-career she was a well-respected PMP and often requested by internal corporate customers to ‘save’ a troubled project. Her teams loved working for her and one of her personal joys was when a developer or tester asked to be on her next project.Bernadette’s disability status changed many aspects of her lifeAbout the same time Bernadette’s career was flourishing she had to come to terms with multiple surgeries and the accompanying comorbidities associated with EDS. It wasn’t until 2017 that she became officially ‘disabled’ by government established standards by that resulted in her losing her beloved house and neighbors. Disability was not a badge of honor for her and led to a long-lasting depression as she tried to accept this unplanned turn in her career goals, financial stability and active life.Ehlers-Danlos is an expensive rare diseaseEhlers-Danlos patients tend to incur many costly medical and surgical needs wiith long rehabilitation periods. Bernadette’s friends are starting this fundraiser to help cover the costs of mobility devices (braces, ankle supports, compression socks), an electric bed base, condo modifications to aid in her getting into the bathroom or a closet (the current doorways are too narrow and she frequently needs to enter side ways so as to not bump a post surgical body part), hand railings to access the entrances to her small condo, shelving assistive devices that could lift or lower items from high or very low shelves providing much needed storage space, veterinary care for her support animal, recommended strengthening devices like a folding treadmill or rowing machine, joint braces, silver splints for fingers and help reduce the ever growing stack of medical bills to avoid collection agencies (hospitals and surgeon ‘conglomerates’ require payment of all copays prior to any surgery or procedure in today’s U.S. medical system), safe fresh food (MCAS limits her option of foods), the costs of transportation, housing, parking, and copays when she must see specialists with strong EDS and MCAS knowledeable teams located out of state.Thank you for taking the time to read Bernadette’s story and getting to know the person you’re considering helping through this nonprofit, Help Hope Live. Your generosity and kindness during Bernadette’s time of need is most appreciated.Donations to Help Hope Live in Bernadette’s name are tax-deductibleHelp Hope Live provides the platform and monitors how the funds are used thus providing donors a tax-deductible contribution while the money doesn’t count as income to Bernadette. Contributons in Bernadette’s name will be dispursed to only her in the form of a grant to prevent the funds going against her government income limitations. You can be sure donations will be used to pay or reimburse medical and related expenses because of Help Hope Live’s stringent vetting processes. This is often in the form of a letter from a person’s doctor.To make a tax-deductible donation to this fundraising campaign, click on the GIVE button. And please share Bernadette’s page on your social media platforms.In the weeks ahead look for personal health updates, new research and treatment updates. She truly is one of the strongest, most resilient and giving people you will ever meet and the last to agree with that statement.Thank you for your support!.For more information, please contact Help Hope Live at 800.642.8399.You are encouraged to research the validity of this 501c3 oarganization at Charity Navigator.Rating InformationGREATThis charity’s score is 99%, earning it a Four-Star rating. If this organization aligns with your passions and values, you can give with confidence.