Family asks for help supporting 15-year-old girl with terminal brain disease

One family is met with a challenge of a lifetime- supporting their 15-year-old with a rare terminal disease.
Published: Jan. 26, 2022 at 10:43 PM CST
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MADISON, Wis. (WMTV) - Through most of their daughter’s battle with a rare disease, the Elsens say they’ve fought it alone. But now they’re turning to the community for help, as one need has become clearer than ever.

“I try not to really hone in on ‘Is her time really coming to an end?’” Melissa Elsen said. “It’s her medical condition.”

She sat across from her daughter Cassidy, 15, in a room at American Family Children’s Hospital Wednesday. Cassidy had been hospitalized since last week, in part due to an infection, and was sedated, Melissa explained.

Nine years ago, when Cassidy was 6 years old, she was diagnosed with a form of leukodystrophy called Vanishing White Matter (VWM), a terminal disease that affects the transmission of brain signals to the rest of the body. Her parents said the disease has taken away Cassidy’s ability to walk on her own, among other symptoms.

According to UW Health, some VWM patients outlive the span for leukodystrophy, which is roughly 5 to 7 years since the diagnosis.

In the last two years, Cassidy’s parents said her condition has worsened and hospitalizations have ramped up to become monthly visits to Madison.

But home is more than two hours away, in La Crosse, and to Cassidy’s father Kevin, that’s where it often hits the hardest.

“It’s tough,” he said, fighting back tears. “I go to work, and I try to stay busy to try to keep my mind off [of Cassidy’s illness].” He described calling people on the road also to keep his mind busy.

Melissa, who is Cassidy’s main caretaker, said, “You will do anything to care for your child. But again, it is very challenging when your loved one is uneasy in any way shape or form, and you cannot seem to console them.”

Kevin and Melissa are now trying to move closer to the hospital, with dreams of a new, accessible house. They said their current house has three floors and no elevator, and modifications could only take them so far.

They are asking the community to support them in their online fundraiser.

“Every day is a day to be cherished. [So is] every second, every moment, whether it’s good, bad or in between,” Melissa said.

Cassidy’s fundraising page can be found here.

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