My name is Greta. I am starting this fundraiser for my 25-year-old niece, Brailey. Brailey’s life has recently fallen apart. In 2024, she realized through her own investigation that she had Hypermobile Ehlers-Danlos Syndrome (HEDS). HEDS is a genetic condition that causes the collagen (the glue that holds your body together) to not form correctly. This causes joints anywhere in the body to move past the normal range of motion, which can cause tears, microtrauma to tendons and muscles, dislocations, subluxations, constant musculoskeletal and joint pain, and can cause early onset arthritis, which for Brailey started at 23 in her hips. She was told to just do PT; nobody investigated why a 23-year-old had arthritis. There is no cure for EDS or one medication she can take to make it go away. She spent everything she saved on genetic testing, referrals to orthopedic specialists, countless PT sessions, and was managing relatively well despite constant musculoskeletal pain and small subluxations in her hips and shoulders. Brailey was working full-time in marketing, serving on multiple boards on the coast, and always on the go. In December, she began having a tingling in the back of her head and TMJ pain. She was told by her doctor and others around her that it was probably just anxiety. She knew something was wrong but had no idea what was happening and just kept pushing through. In January of 2025, she woke up with a horrible headache and shoulder pain and went to an ortho urgent care where they did an X-ray that showed excessive movement in her lower vertebrae, but they just told her to do PT and gave her steroids and a muscle relaxer. She did the PT and tried to get through every day, but she began having daily headaches, pressure in her head, syncope, and the feeling that her head was too heavy for her neck, along with shoulder pain and increased popping and cracking throughout her body, including her neck, which had never made noises before.

Again, through her OWN investigation since no local doctors were helping or could give clear answers, she found out she may have Cranial Cervical Instability. She spent her own time and money investigating EDS neurosurgeons to receive the correct imaging she needed of her brain and cervical spine. During this time, she tried going to PT where they made all her joints worse and led to her developing tendinosis in her hips and shoulders. She even saw an orthopedic specialist at Bienville for hip MRIs, which revealed these issues and an impingement in both hips but was offered no assistance or surgery due to having EDS. Local doctors act like she is crazy or untouchable due to having EDS. She has had to spend her own money on regenerative medicine and finding specialists across the US. She is currently on short-term disability that is ending soon through her employer and has gone through all of her savings trying to receive help as most EDS specialists do not take insurance. Brailey has been to the ER multiple times since January, was bedridden most of February due to the pain, and has had to rely on others to take care of her.

The neurosurgeon in South Carolina also thinks Brailey may have a tethered spinal cord, which is only treatable through surgery. Brailey is looking at multiple surgeries for her body, traveling for care, exploring regenerative options which are insanely expensive, and just overall stress of her life and body changing so quickly and with no clear guidance on exactly what to do. Any donation will be greatly appreciated. All funds donated will be used to pay medical bills not covered by insurance.