When 19-year-old Kourtney Kujawa thinks about her dream of going to college and becoming a counsellor – of drawing on her difficult life experiences to help others – she cries.

A recent drop in funding for her medical needs has put those plans on hold.

"I'd just love to live independently on my own one day and have a job to go to," Kourtney said. "To help other people, because I've been through so much."

Kourtney suffers from epidermolysis bullosa, a rare and painful disorder that's left the teenager stuck in stasis, spending most of her time trapped in her parents' home in B.C.'s Fraser Valley.

The condition causes skin to blister and fall off, leaving wounds that can take months to heal. The symptoms are sometimes explained by conjuring the image of a very ripe peach.

"When you peel the skin it's very soft and it comes off very easily," Kourtney said.

Contractures caused by the constant blistering and scarring have also claimed the young Abbotsford resident's fingers, leaving her hands in a club shape. Other contractures on her hips prevent her from standing up straight or walking as well as she used to.

"I can't get dressed by myself, go to the washroom, I can't do my own hair or anything like that. I need a lot of assistance," Kourtney said.

Her pain is managed fairly well, but there are still good days and bad days. On bad days she can’t bear to leave the house, and even on good ones she can require help at any hour.

Unfortunately, since her last birthday an unsustainable amount of that responsibility has fallen on her parents, who both work full-time.

Kourtney used to be covered under the Ministry of Children and Family Development, which provided her with 267 hours of help from a care or nursing aid every month.

Her needs didn't change when she turned 19 last fall, but her funding through the Fraser Health Authority dropped by 100 hours. As a result, her dream of pursuing an education – of creating a purpose for herself – has been put on pause indefinitely.

"It's been really hard," Kourtney said, her eyes welling with tears. "I haven't been able to do the things I've wanted to do, including school, and it's been very hard on me… and my family, too."

One of the tasks that's fallen on her parents is keeping roughly nine-tenths of Kourtney's body wrapped in bandages, a process that takes four hours every other day, according to her mother, Janelle. They also take her to see a wound care specialist once a week.

When they reached out to Fraser Health, the family claims the health authority suggested they simply find new ways to apply her dressings to save time.

"I laughed," said Kourtney. "It's funny that they have the audacity to say that kind of thing to us."

"When I asked them, do you know what epidermolysis bullosa is? They said no, we have no idea," Janelle added.

This week, Fraser Health told CTV News it's working with the Kujawas to support Kourtney's transition from youth to adult care, but it's unclear what that will mean for her goals.

Spokesperson Tasleem Juma said the teenager's case falls under the province's Choices in Supports for Independent Living, which assesses the number of care hours required for "medical and personal" needs.

"Support to attend school or work is not considered a health care need and is therefore not provided under the guidelines," Juma wrote in an email.

"Our client is receiving the maximum amount of support for her current needs under the guidelines. We have committed to providing a reassessment of her needs, and should these have changed, we will ensure she receives the appropriate level of care.”

In the meantime, all Kourtney and her family can do is wait – through the good days and the bad.