Family and friends of Jamie are raising money for life saving medical treatment that insurance will not cover. Jamie has chosen to fundraise with Help Hope Live in part because donations are tax deductible for contributors and will only be used to cover medical and related expenses.
Summary: Jamie’s life is at risk and she is in urgent need of care that insurance has chosen not to cover! She needs our help to cover the cost of services (not covered by insurance) for her last chance at survival, which lies in the program at The Spero Clinic. Jamie has a rare dual-genetic diagnosis and has been battling relentless infections and sepsis since October 2024, leaving her hospitalized every month since, and pushing through the uncertainty of each day as her health declines. She relies on central lines (a special IV that goes to the heart) for nutrition, hydration, and chemotherapy (chemical therapy). But these infections are contributing to heart problems, allergic reactions, poor vascular function, nervous system overwhelm, poor adrenal function and more. With each infection Jamie loses her life line, that central IV access that allows her to receive her nutrients and medicines and then risks losing complete access to these vital things. All treatments covered by insurance have been exhausted (including anything Mayo Clinic could provide) and she has watched doctors give up on her. Despite these challenges, Jamie has a mission to inspire her community and she holds a very special ability to bring people together. She uses art as a tool to connect and educate, holds onto hope, and is constantly trying to keep a positive outlook on life. She shares what knowledge she has gained through these dreadful medical experiences in hopes of helping others who may be facing similar struggles. Her most promising treatment option is this 14+ week Neurologic Rehabilitation Program, where she has seen others take back their lives! In order to make this treatment possible, the funds raised with this fundraiser will help cover all treatment expenses, which can total more than $50,000 out of pocket (only taking into account medical care). With your support, Jamie has one last chance to rebuild her health and have a future.
The details:
Jamie’s journey has been filled with strength, endurance, and an unwavering will to live. Jamie was diagnosed with CRPS (Complex Regional Pain Syndrome) in 2019, then later a dual genetic diagnosis of Osteogenesis Imperfecta (Brittle Bone Disease) with Ehlers-Danlos Syndrome. With these diagnoses came others like MCAS (Mast Cell Activation Syndrome), POTS (Postural Orthostatic Tachycardia Syndrome), and a rare Neuropathy. These conditions have affected how Jamie’s body functions and have made even simple tasks difficult at times. One of her most vital functions, eating, has been changed for Jamie as she now relies on Intravenous Nutrition to supply her body with what it needs. This requires central access (an IV line that supplies the nutrients from Total Parenteral Nutrition straight to her heart).
Since October 2024, she has been trapped in a cycle of chronic staph infections and MRSA. She has been hospitalized every month, faced life-threatening infection multiple times, and has nearly lost all access for IV and central lines — the very lifelines that provide her with nutrition, hydration, and treatments. Without them, Jamie cannot survive but with them, she faces relentless infections and dangerous blood clots.
Currently on and off IV antibiotics, she faces a painful reality: each time antibiotic treatment stops, the infections return more quickly and more severely than the last. Eventually, these infections will become resistant to the antibiotics, or her access will run out. Both paths lead to decline. She is now on palliative care, but her hope survives.
Jamie has spent the last 12 years exhausting every option she has available to her in the western medical system, one of her last chances for survival lies at the Spero Clinic in Fayetteville, Arkansas. Their unique approach focuses on treating the source of her infections, her pain, her inability to absorb nutrients and more—a broken central nervous system. She has seen friends walk away from their care in remission, free from severe pain and other conditions, and able to live fully again. Their program is intensive, lasting 14+ weeks, but Jamie is ready for the challenge — and for the chance to live.
Unfortunately, insurance will not cover her care. She needs help with treatment costs, travel and lodging for the duration of her stay. Help, Hope Live will make sure the funds raised with this fundraiser go directly toward these medical bills and related expenses.
Jamie dreams of a future without constant infections and hospital stays — a life where she can focus on living instead of merely surviving. Jamie strives to use her experiences and knowledge to help others going through similar circumstances or challenges. She is a performer with Phamaly Theatre company, dance instructor with Feel The Beat and leads the adaptive dance team Rollout. She loves to express herself through the arts and get others involved despite her difficulties with health. With your support, that future is possible. Every donation brings her closer to the healing and future she desperately needs.
Below you will find comments from Jamie’s friends about the kind of person she is:
“I personally was motivated by Jamie’s attitude of positivity while I was first dealing with cancer. I knew there was an end date for my diagnosis, and I thought, ‘If Jamie can stay so upbeat while dealing with a chronic illness that is constantly throwing her curveballs, then I can do it for a year and a half’! I also notice how many wonderful friends she has, which told me early on that Jamie must also be a great and loyal friend… because we attract what we already are”!! -Becca
“I feel outside of her diagnosis, Jamie is a fighter even without medical, emotional or any diagnosed challenges, she has had a lot but always ends up carrying good energy. I love how Jamie’s relatable and not at all judgy. She has such a hopeful forward attitude and even if we have slower or sadder deeper days together she is so much more patient than is required or deserved. I feel I’m still getting to know the quirky sides of Jamie but I do love things like her stuffed animal collection and I feel it’s a wonderful piece of quirkiness. I think as there is only more for me to learn, still I think her energy is so beautiful and kind and it’d be either a sign of someone possibly knowing more of her depth or a sign of someone not attentive to not acknowledge or first think of this kindness she spreads like its own contagious diagnosis… I’m joking but seriously glad to have caught it. I’m lucky to know Jamie out of all the 8 billion people to have had the chance to meet her”. -Zoe
“I firmly believe that the best people in this world are the most humorous. They’re the ones who’ve suffered the most in their life, yet despite it all, continue to see the good in the world and find something to smile and laugh about every day. Which is why Jamie is among the kindest, funniest, most compassionate humans I’ve ever met, and who l have the great pleasure of calling my friend. Jamie is an incredibly gifted singer and dancer, and can learn and execute choreography with seemingly effortless ease. On top of that, Jamie is an excellent team player and will show up for you no matter what, even if it’s not right in front of your face”. -Casey
“Jamie is Fun, loving and full of sunshine. Always has a brightness and a smile. Enjoys the simple things like the flowers blooming in the spring and soft rain to spin around in. Creative and has a good eye for detail and decor. Loves her doggy. She is kind, caring, giving and goal oriented”. -Yvonne
“Jamie has a positive outlook of her future. She smiles despite her disabilities. She is Jeremiah 29:11 giving her strength and endurance, despite everything going on”. -Terry
“Well número uno Jamie has great faith in God and hope in seeing loved ones again especially her mom (09/06/2010). That hope keeps her going through especially difficult times. For good or bad she always has a noise lol just a little quirk. I love how willing to be silly she is, she doesn’t hold back the feelings of silly. Jamie is a nerd girl who appreciates sci-fi and anime. She always makes me laugh, and has great reactions so she knows how things affect her (like a gift) and knows how to make and give great gifts! Jamie is a loyal friend, who cares deeply about others. She has style. Jamie loves to dance no matter what challenge is in her way, it’s how she express herself. She LOVES the ocean just to be near it or touch it makes her incredibly happy. Jamie has an infectious smile that breaks through the most unbearable circumstances. She is loved by so many”. -Karah
“Jamie always has a smile on her face. Even when things are difficult, she has a really positive attitude, and it rubs off on everyone around her”. -Amber
“I cant explain to you how important Jamie is to her community, the light she brings, how she changed my life with wheelchair dancing, and how lost we would feel without her.” -Shelby
