Kaylie's Fight Against Rare Susac's Syndrome

Hi Everyone,

Our dear friend Kaylie is in need of our support as she continues to face medical challenges. At this time, doctors are diagnosing Kaylie with a very rare autoimmune disease known as Susac's Syndrome. Unfortunately, due to its rarity and lack of resources for specialized treatment studies, the medications included in Kaylie's current treatment plan are not covered by insurance. Please join me in supporting our friend and her family by making sure she has the resources to manage her care and fight this rare battle. Your donations will not only help make treatment possible, but assist with the financial burden of her growing medical bills, the transportation costs for her parents and daughter to be by her side, and to continue her journey of healing once she is able to take those next steps outside of the hospital.

Background:

What started as a nasty ear infection, quickly turned into severe headaches and cognitive issues. Kaylie spent several days having various tests ran while being unaware of her surroundings, feeling very confused, and struggling with temporary memory loss. She was told she may have MS, but those tests take weeks for results to confirm. Then she was told it may be ADEM and that her immune system had attacked her brain. After showing some improvement, Kaylie was transferred to a rehab center with hopes of being able to go home the week of Thanksgiving. Unfortunately she regressed pretty badly and ended up back in the ER.

Since early November, Kaylie has bounced around between different hospitals and a rehab facility. Having already missed being by her dad's side as he underwent pancreatic surgery, Kaylie is still in a hospital fighting and preparing to miss another holiday with her daughter plus her own birthday.

Diagnosis + Treatment:

Kaylie has been diagnosed with Susac's Syndrome - a rare autoimmune condition where the immune system attacks the smallest blood vessels in the brain, retina, and inner ear. This attack blocks or decreases blood flow causing symptoms such as hearing and vision loss as well encephalopathy (brain function problems) leading to headaches and confusion. In addition, Kaylie is experiencing other brain symptoms like difficulty walking (currently unable), and short-term memory loss.

Before Kaylie can attempt to go home and begin the full treatment plan, she needs a medication that is not covered by her insurance. Without the medication, she will regress and start back at ground zero. The immunosuppressant, Rituximab, is a monoclonal antibody that has been used to treat certain types of cancer and resembles chemo. The base case of Rituximab infusions (one initial loading dose and one subsequent dose) costs over $20,000.

Making a Difference:

We have created this campaign in hopes of quickly pursuing the treatment Kaylie needs. Your support will help Kaylie focus on what matters most in this fight - her health for her, her daughter, and her family. Our donations will aid in taking some of the additional stress that comes with costly medical bills, treatment expenses, and loss wages as she is unable to work. Every contribution, no matter the amount, will make a meaningful impact on her journey.

We are grateful for your generosity and kindness during this challenging time. Your support can truly make an impact and we cannot thank you enough.