Local teen is bravely battling a rare disease | VailDaily.com

Local teen is bravely battling a rare disease

Valley native Solstice Jensen, 14, is battling a rare disease. Locals are rallying with fundraisers around the area. One is set for lunch today at the Blue Plate Bistro in Avon.
Special to the Daily |

If You Go

What: Pulled Pork Madness Returns...This Time For a Cause

When: Thursday, 11:30 a.m.-2:3 p.m.

Where: Blue Plate Bistro, Avon

Cost: Admission is free. Pulled pork sandwiches are $2

Information: Solstice Jensen, 14, is suffering from a rare disease that could kill her. Everything the Blue Plate Bistro collects during Thursday’s lunch event goes to Solstice and her family. Call 970-845-2252.

To Help

Donations are being accepted at solsticehae.blogspot.com, or bring checks off at Blue Plate.

EAGLE COUNTY — To save her only child’s life, Amanda Jensen made a decision that could have killed her.

Solstice Jensen suffers from a disease so rare that only three doctors in the U.S. understand it.

If they stayed in the Denver hospital, Solstice would die.

If they flew to Cincinnati to see one of those three specialists, the trip could kill her.

Amanda loves her daughter without question or measure, and where there is love there is hope. So, last Friday she stomped down her tears, squared her shoulders, injected Solstice with her many medications so she wouldn’t swell up, stroke out and die during the flight, and they boarded the plane.

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“I am making a decision where there is none,” Amanda said. “I can leave her in this hospital bed until it takes her life, or I can put her on a plane and hope that the elevation doesn’t affect the swelling in her head, hope she doesn’t have an attack in the air, hope she makes the trip to one of only three known specialists to the disease. It’s our last hope.”

Solstice survived to see Dr. Jonathan Bernstein in Cincinnati, Ohio, who had scheduled a 20-minute office appointment. It didn’t take that long. He took one look at Solstice and checked her into Cincinnati’s Children’s Hospital.

Solstice has been to more than 30 doctors in Denver, and none could help her, Amanda said.

“She was getting worse and worse and worse,” Amanda said. “She’s been in the hospital for more than a month this time, and she just keeps getting sicker every day.”

Amanda grew so frustrated that she had to sign a social contract stipulating she’d be nice to the doctors and couldn’t cry in hospital. She knew they had to leave.

A kind friend in the valley bought their plane tickets to Cincinnati — one-way tickets because they had no idea how long it would take, Amanda said.

Locals rallying

Locals are beginning to rally to Solstice’s cause. The Blue Plate Bistro is donating all the money made during Thursday’s Pulled Pork Madness lunch to Solstice and her family.

“It doesn’t matter what you buy, the money goes to Solstice,” said Elisabeth Roustom with the Blue Plate Bistro. “We usually run out of pork, so feel free to buy something else.”

Solstice attended Red Sandstone Elementary and Minturn Middle School. She has lived with pain since she was a baby. The disease doesn’t usually hit people until they’re in their 30s, or at least until puberty.

Solstice’s HAE started its rampage a few years ago when she was bitten by a brown recluse spider at summer camp. She immediately began to swell up.

No doctors in Colorado had seen anything quite like it.

“Some doctors told her she needed a psych consult. The pain was real,” Amanda said.

Death’s daily call

Solstice Jensen is 14 and stares down death every single day. Death is staring back, and so far neither has blinked.

Solstice is one of those one-in-a-million kids: Happy, pretty, smart, strong in heart and mind, and talented.

“I always knew she was special; I had no idea how special,” Amanda said.

Solstice is actually 1 in 5 million. That’s how many have her disease, Hereditary Angioedema, type 3. Essentially, the fluid that runs through our veins escapes her veins, flowing into her soft tissue and brain. When that happens she has what amounts to an attack. Most HAE sufferers endure two or three attacks a month, and 33 percent still die. Solstice suffers as many as five attacks a day.

She has to take drugs when she has an attack, shooting up herself with a butterfly needle. That stops it.

Her abdomen is so swollen she appears nine months pregnant. She’s a show stopping singer-song writer, but she can no longer hold her guitar. A lifetime ski racer, she is now in a wheelchair.

She sometimes loses her entire inner field of vision for several days and appears to have mini strokes. She’s in so much pain that she’s on around-the-clock IV doses of both fentanyl (100 times stronger than morphine) and dilaudid (known as hospital heroin.)

It doesn’t stop there. With nearly every attack, her throat swells and she can’t breathe. She descends from perfectly breathing to strangling in moments.

That’s the physical cost. Her drugs cost more than $1 million dollars a year.

One of the drugs Solstice needs isn’t supposed to go to kids under 18, so Amanda can’t get assistance. The co-pay is $9,000 a month.

She tried for a medical transfer from Denver to Cincinnati, but their insurance company turned them down.

Solstice is doing better, Amanda said Tuesday. The doctors in Cincinnati altered her medication and the swelling is going down. She’s walking a little.

She will never be without pain, but she’s learning to live with it, Amanda said.

The most important part is that she lives, because where there’s life there’s hope, and Solstice is not only living, she’s alive.

Staff Writer Randy Wyrick can be reached at 970-748-2935 or rwyrick@vaildaily.com.

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