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

MADISON, Wisconsin (WMTV) – The Elsens say they fought most of their daughter’s battle with a rare disease alone. But now they are turning to the community for help as a need has become clearer than ever.

“I try not to really go into, ‘Is her time really up?'” Melissa Elsen said. “It’s her health condition.”

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

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

According to UW Health, some VWM patients survive the leukodystrophy period, which is approximately 5 to 7 years from diagnosis.

Over the past two years, Cassidy’s parents said her condition had worsened and hospitalizations had turned into monthly visits to Madison.

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

“It’s hard,” he said, fighting back tears. “I go to work and try to stay busy to distract myself [of Cassidy’s illness].” He described calling people on the street to keep his mind busy.

Melissa, Cassidy’s primary caregiver, said: “You will do whatever it takes to provide for your child. But again, it’s very challenging when your loved one is upset in any way and you can’t seem to comfort them.

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

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

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

Cassidy’s fundraising page can be found here.

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