Help make a difference in Emily's life

In November of 2021, Emily's life took an unexpected and devastating turn. What was supposed to be an exciting and adventurous time for her and her young family turned into a heart-wrenching battle for survival and recovery. Emily was happy, healthy, and looking forward to building her future with her new, young family. She enjoyed her job and cherished spending time with her pets and her friends. She was discovering new hobbies and trying to balance everything with being a new mom. This was supposed to be an exciting, adventurous time for Emily and her family, instead, it turned terribly tragic.

In early November 2021, Emily started feeling ill, she lacked energy, was unable to eat or drink, and noticed swelling and soreness all over her body. She was admitted to the hospital on an emergency basis and had multiple tests run. Initially, the doctors were completely stumped, there were various theories as to what was going on, some more terrifying than others.

She was relying on the doctors and nurses at the hospital to keep her alive and for any social interaction. Emily was in the hospital for about two weeks, alone and terrified. I can only imagine the heartache she felt that, due to pandemic restrictions, she was unable to see or hold her young daughter.

Emily was resuscitated twice and had to have a lifesaving bedside procedure. When she was finally discharged, she left with more questions than answers, a mystery illness, and a body that had been pushed to its limits. The doctors were recommending more diagnostic testing and referral to specialists, with caution that they were unsure if this would even help.

After months of more tests and countless different medications that never really helped, it was determined that Emily had developed AOSD (Adult Onset Still Disease). Still’s Disease is an extremely rare inflammatory disorder that affects the entire body. It can result in very painful inflammatory flare-ups as well as high fever and a rash.

Emily was also diagnosed with Pericarditis (inflammation of the tissue surrounding the heart) and Myocarditis (inflammation of the heart itself). These conditions weaken the heart and cause it to work extra hard to function properly. Pericarditis can also result in severe chest pain and shortness of breath.

These diagnoses obviously changed the course of Emily’s life, she is more susceptible to illness and her body must work harder all the time to function normally.

What is even more heart-wrenching is that these conditions are believed to have been triggered by a rare reaction to the COVID-19 vaccine. While Emily was trying to protect her family, co-workers and strangers, her body reacted to the vaccine and she almost died.

I wish I could say that with diagnoses and probable cause for them, Emily’s life got more manageable, however, this is not the case. Still’s Disease does not have a cure. There are extremely expensive bi-weekly injections that can be given to help keep the symptoms at bay but Emily has had to learn to adjust to a life of chronic pain, medications, exhaustion, flare-ups and now being immunocompromised.

Not only has this been a physically exhausting time for Emily, but it has also been emotionally draining. Trying to remain somewhat positive during a time of such terrifying uncertainty could wear anyone out.

The financial cost has also taken a huge toll on Emily and her family. She has missed an abundance of work resulting in using up all of her sick/vacation days. There have been costs incurred from medical visits, referrals to specialists and treatments that are not covered by health care or extended benefits.

Recently, one of Emily’s beloved dogs tore his ACL (anterior cruciate ligament) and requires expensive surgery to fix it. On top of everything she has going on in her life this is just a blow that she did not need, nor can she financially support.

Imagine the weight of that. But, here’s what’s incredible: Emily is an absolute trooper. During this entire ordeal, Emily has had to continue to be a friend, a partner, a co-worker, and a new mother. She has had to be a role model for her young daughter. And honestly, she’s gone through all of this with a poise and grace that are remarkable. Somehow, she’s managed to maintain the spark of her bubbly self.

Emily does not allow people to care for her, she tries to care for everyone around her.

She does not ask for help. So, I’m asking for her.

Emily's story could happen to any of us. Your support isn't just about her; it's about demonstrating the incredible things we can achieve when we come together. Remember, every contribution, no matter how small, holds immense power to make a tangible impact on Emily and her family. Let's join together and change the narrative of Emily’s story.

Stay connected to Emily's progress as we raise funds for her medications, treatment and everyday life. We'll keep you updated on how your contributions are making a significant difference for a wonderful person.

-From a friend who wishes she had a magic wand to wave and make this all better.