Please help Jessie and her family

Hi, My name is Aislinn Weintraub and I am raising money for my friend, Jessie Damroth. As some of you may already be aware, Jessie has been diagnosed with a demyelinating disease linked to an ultra-rare genetic mutation called TANC2. You may also be aware that Jessie is the single parent to two medically-complex kids who have this TANC2 mutation as well.

Her medical team describes her condition as similar to an aggressive form of multiple sclerosis, the most common and well known demyelinating disease. However, unlike other demyelinating diseases, there currently is no cure or treatment.

Demyelination is very serious due to the myelin on the axon of nerve cells impacting the speed at which impulses travel. In layman’s terms the loss of myelin causes the body to be unable to send the messages needed for both voluntary and involuntary body functions at a fast enough pace. This drastically impacts a person’s quality of life and ability to function. For Jessie these issues include struggling to walk and use stairs, constantly losing her balance, struggling to hold and carry items, and many other symptoms.

For people unfamiliar with Jessie’s family’s journey, Jessie and her kids were diagnosed with TANC2 in 2021. Unfortunately due to the extremely rare nature of this condition very little was known about the gene. There were under 30 people in the world with a documented TANC2 mutation. Jessie, in true Jessie style, threw herself into learning everything she could about TANC2 and getting Ayden and Logan in front of the best doctors, and the best researchers, putting her kids before her own needs. Right now doctors don’t even know fully what the gene does or its impact. One of the doctors actually said to Jessie, the best shot you have at helping your kids is to go track anyone down in the world you can find with this mutation and come up with a symptom list. Jessie took that to heart and she founded a Facebook group for patients and parents/ guardians, and started emailing and calling every researcher worldwide that studied this gene or any of the symptoms of her and the kids.

For those of you who know and love Jessie, you know that she has prioritized her children’s health and needs over her own throughout this struggle. As a result you may not know much about her own medical struggle with TANC2. The most consequential impact of TANC2 for Jessie is multiple sclerosis type brain lesions. They were first discovered via MRI in her early 20s but the TANC2 gene wasn’t even discovered at that point so no one knew what they were. Fast forward to the past 3 years, while this was all happening with the kids' health and TANC2 discovery, Jessie’s brain lesions started rapidly increasing in numbers all over her brain- they have tripled and the existing lesions have expanded.

By last fall, even though many would not have guessed because Jessie puts on a ridiculously strong face-, Jessie was consistently in extreme pain. By this spring, she had totally lost depth perception visually. The constant neuroinflammation took a serious toll on Jessie, she was losing her ability to remember things, and her exhaustion level had increased- by February/ March of this year, she was taking 7-8 naps a day just to make it through a day. She would need a nap just from emptying the dishwasher. Jessie’s life has become largely either at home or at doctors’ visits for herself and her children.

Jessie has been unable to work during all this, and as a single parent the stress and uncertainty of this has been unbearable. Which brings me to my point, and why I have started this Go Fund Me.

Jessie's medical team has suggested Intravenous immunoglobulin (IVIg). To give IVIg the best possible shot Jessie's should reduce her stress levels and be able to focus on her own health.

In order to take the stress off Jessie during the IVIg treatments I am hoping we can help her cover rent, transportation to and from doctor appointments, food, expenses incurred as a result of this and expenses incurred with Logan and Ayden’s TANC2 medical journey. I hope those who can will consider giving what they can and/or sharing this Go Fund Me to truly give to a person and her two kids who so truly need our love and support right now.