Her second home is the Children’s Hospital in Seattle and her second family is a team of doctors, but Taylee Escalante has control over her life, it’s not controlled by Microscopic Polyangiitis.
MPA is a form of vasculitis, an inflammatory condition that affects the blood vessels; it affects the small blood vessels, including the arterioles, capillaries and venules. An autoimmune disease, MPA makes Taylee’s immune system attacks her blood vessels. Three in a million are diagnosed with MPA, though Taylee said it could be more common than those numbers indicate since untreated MPA is often fatal within five months.
Taylee was diagnosed with little time to spare —four months, she said.
“I was in fifth grade and I was sick all the time,” Taylee said. She missed tons of school and has undergone homeschooling at times when she was unable to leave her bed.
Taylee was exhibiting flu-like symptoms and it wasn’t until she had been rushed to the hospital with difficulty breathing, when her mother, Tiana Escalante, pointed out the pink tinge to her urine, that doctors got on the right track to diagnosing Taylee’s condition correctly. MPA usually strikes people in their 50s or 60s.
The list of things Taylee has gone through is enough to make the average person cringe; she has had multiple biopsies, surgeries, chemotherapy, a blood transfusion and more. Taylee had to have her heart defribillated as a result of her chemotherapy treatment, leaving a burn on her chest. She said the burn hurt worse than the shock.
“I have a high tolerance for pain,” Taylee said without exaggeration.
Taylee has to take a cocktail of immunosuppressive, blood pressure and nausea medications, about six pills a day, her mother, Tiana Escalante, said.
Occasionally, Taylee admitted, she’ll feel like asking, “Why me?” but mostly she said she considers herself “a strong individual who was granted with it.” She is an advocate and activist for vasculitis awareness, telling her story openly and educating peers and teachers, some of whom, Taylee said, have told her she’s an inspiration.
The title “inspiration” isn’t bestowed on Taylee just for living with MPA, but for how she lives.
After aggressive treatment, Taylee has been in remission for five or six years, she said. Taylee missed out on a lot of her childhood and teen years, spending a lot of time confined to bed, in the hospital, traveling to and from Seattle — but she’s gone out of her way to have some of the normal teen experiences, including attending prom wearing heels — not great for the necrotic bone tissue in her leg, she said — and being involved in sports. She played soccer and volleyball when she was younger, but now pain and potential for serious injury keep her off the field and court, but not out of the game entirely. She has served as team manager for the track and field and hockey teams — it was on a trip with the track and field team that she slipped and fell, re-injuring her leg and discovering more necrotic tissue, thought to caused by the prednisone used to treat her MPA.
“I can’t do anything very active anymore because of my knee,” Taylee said. She said sometimes the pain from her knee will shoot through her thigh, so she has to be careful.
“I know my limits,” she said, “I’ll still walk with my friends. I went to prom and wore high heels.”
MPA has intrusively cut out most physical activity in Taylee’s life, and has also made her school attendance pretty terrible, though, she said, she’d have perfect attendance if it weren’t for all her health related absences. She has missed about 400 days of school over the years, not including the time she was homeschooled because she could barely leave her bed. Despite her absences, Taylee will graduate with her peers next week, boasting a B-average GPA.
She plans to take six months off before attending the University of Alaska Southeast to study health sciences — yes, she has been inspired by all her time spent in hospitals, and probably also her close relationship with the team of doctors who have cared for her; she will have to transition to new doctors now that she’s an adult. It’s appealing to Taylee to be able to stay close to her family, not just because living at home is cheaper than university housing costs, but because her family has been so supportive. Taylee’s family consists of her mother, who has been diagnosed with Crohn’s disease, her father Valiente Escalante and her younger brother Valiente Jr., who is only a few years old.
Taylee is an inspiration to her family as well as to others, Tiana said, “Taylee is a fighter. She has shown me what courage, strength and perseverance is. She is an amazing young woman who I am very proud to call my daughter.”
Though Taylee’s health problems pose many difficulties, Taylee’s behavior probably makes parents of teens everywhere jealous.
She is responsible and independent, to the point that she didn’t have a single house party when she was left home alone for more than a month.
Partying doesn’t interest Taylee, who speculated it might be because she’s been pretty close to death and isn’t interested in putting herself in any sort of danger. She much prefers spending time with friends and family in a healthy setting, and making art.
Taylee likes graphite drawing, working with pastels, and sometimes painting with acrylics.
Tiana instantly brought up a photo she had taken on her phone of a portrait Taylee had done of Valiente Jr. She’s proud of her daughter’s art as well.
Because vasculitis is so rare, Taylee’s support system is made up of family, friends from school and her doctors — she hasn’t met many people with vasculitis, and many she has met are no longer around.
She met a boy with a different form of vasculitis who was about her age through the Ronald McDonald house, but he passed away. She said there were a couple people up north, both in their 50s or 60s. Most people with vasculitis, Taylee said, are “very depressed and down on it.”
Tiana said to Taylee, “No one would ever guess that you’re sick. You’re so happy, you never drown in your sorrows.”
And to an extent, Taylee likes it that way. She said she doesn’t always tell people she has vasculitis because she wants people to treat her normally, to be her friend because they want to be her friend, not out of pity for her condition.
But, Taylee said, “It’s shaped who I am.”
Taylee said she’s accepted it and talks about it, that she wants people to know about it.
“As a parent,” Tiana said, “It’s the worst thing to watch your child suffer and not be able to help. I want to do something to help in some way. I don’t know how other then to bring awareness.”
Tiana said she and Taylee have been working on awareness of vasculitis in Juneau. Tiana hopes that awareness will help some people get diagnosed in time to get treatment, or that more awareness will lead to more research and perhaps, someday, a cure.
May is Vasculitis Awareness Month and with prompting from Taylee and cooperation from counselors, students at JDHS made some large posters on red butcher paper that now hang around the commons area. When Taylee graduates in a week, her peers will know the battles she fought to get there.
For more information about the vasculitis family of diseases or to support the Vasculitis Foundation, visit vasculitisfoundation.org.