Zora’s New York Fashion Week Experience

Zora experienced an exceedingly long and emotionally painful road to her diagnosis.

Originally, doctors categorized her seizures as psychosomatic and said her headaches were psychological manifestations. After months of constant seizures that could only be controlled by placing her in a coma, Zora finally responded to medication, which led to a formal diagnosis. But, this led to more questions than answers for Zora and her family.

In 2017, 15-year-old Zora was diagnosed with Limbic encephalitis—an autoimmune disease that causes brain inflammation and limits its function. Zora lost the ability to walk and speak clearly and requires 100% assistance with all activities of daily life such as bathing, dressing, toileting, and mobility.

She has endured three separate hospitalizations—lasting seven months, four months, and three months—and has undergone every medical procedure imaginable such as spinal taps, plasmapheresis, and intestinal surgery.

“Her illness completely altered our life,” Zora’s mom, Heather, said. “We are devastated that she will always need assistance. It saddens me to the depths of my core on a daily basis. It is exhausting to watch your child, with their whole life ahead of them, live a life full of medication, doctors, therapy, recovery, and constant adaptation.”

Zora’s mom said it is difficult to understand the extremity of Zora’s feelings as she grapples with her illness because she tries to be positive. Some days are especially hard though when Zora compares herself to her able-bodied peers and family members.

When her friends go to Enchanted Rock, she can’t because the adaptation and mobility assistance needed isn’t available. When her friends attend a concert, she has to pay extra for accessible seating and can’t be on the floor like everyone else.

“I can see the toll it has taken on her when she shrinks herself down and tries to simply exist in our able-bodied world,” Heather said. “It is the most painful thing in the world to witness her suffering and not be able to affect any change. I feel like a failure in many ways watching Zora experience her life because I cannot change it in the ways she would like me to.”

However, Zora’s self-determination and family support have given her the strength to keep fighting for better days. Zora’s mom said her daughter’s life is incredibly motivational.

“It feels empowering to know I raised a child that can withstand these challenges and still enjoy life and learning,” Zora’s mom said. “At 15, she experienced life altering changes and is now a junior in college with a life, goals, and is thriving.”

When Zora first heard about Make-A-Wish, she was thrilled. Her parents were excited that Zora could finally choose to do something that would make her happy.

Zora wished to attend New York Fashion Week. She enjoyed a private tour of Tory Burch’s flagship store and selected a pair of shoes from the gallery. She received a full beauty make-over at Nordstrom’s downtown and sat front row at the Ulla Johnson fashion show where Katie Holmes and other actresses and influencers attended.

On her last day in New York, Zora had a live-buying experience with Nordstrom buyers at designer Nellie Partow’s studio, and even got to meet Ms. Partow and view her latest collection.

Zora’s mom said the best part about her wish was seeing her happy. Zora loves New York and going during fashion week was the cherry on top.

Zora’s wish showed her there are people who care about her, see her, and who can empathize with her. She felt empowered after her wish, ready to take on any arising obstacles.

“Having positive experiences, like Make-A-Wish, made her feel like people, nameless and faceless, cared about her. It provides strength and courage for her,” Zora’s mom said.

Zora hopes the joy her and her family experienced during her wish will be available to more families. Zora’s mom said the family has always been a tight-knit unit, and this trip just unified them more.

“We are eternally grateful and thankful for the work this organization does and all the Make-A-Wish supporters across the world,” Zora’s mom said. “To be able to experience this joy together was deeply appreciated.”

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