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NMOtion Blog

Discussing NMO Research and Advocacy

A “Kindred” Connection

Award-Winning High School Art Student Honors Grandmother by Raising Funds for NMO Research

Award-Winning High School Art Student Honors Grandmother Who Has NMO

“Neuromyelitis optica (NMO) is a cruel disease – and it hides,” says Bonita Melonio, whose mother, Jean Wajler, was diagnosed with NMO at the age of 75.

NMO is an autoimmune disease that causes the immune system to mistakenly attack the spinal cord and/or the optic nerves. As a result, a patient suffers acute paralysis and/or blindness.  Other symptoms include nausea, uncontrollable hiccups and vomiting.  It is also misdiagnosed as multiple sclerosis (MS).

The Beginning…

It’s a cold December in 2015, in Pennsylvania. Jean is hospitalized with pneumonia. She’s “extraordinarily weak” and experiences uncontrollable hiccups and vomiting.

“Everyone missed it.”

Pictured from left to right: Serena Melonio, Zygmunt & Jean Wajler, Priya Melonio

At first, doctors believe the cause is a stroke, but her MRI results come back negative. Other medical staff believe her symptoms are a result of severe depression.  After just three days from when she’s admitted to the hospital, Jean is paralyzed from the chest down.

“Everyone missed it,” says Bonita.  Within the first week, the family is told that Jean will never be able to stand again.

NMO-IgG Test

Diagnosing NMO as early as possible increases the chance of best outcomes.  Yet, the easiest and, at the same time, the hardest part of diagnosing NMO is being aware of it. Eventually, doctors order the NMO-IgG test for Jean. It comes back positive, but it’s too late. Jean’s unresponsive to treatment.  As a result, the family’s told that there’s no hope for a full recovery.

“NMO is equally as devastating as cancer or ALS.”

Jean’s NMO attack doesn’t only paralyze her body, it paralyzes all aspects of her life. She can no longer be with her husband, and she lives in a state of confusion and pain. Consequently, NMO diminishes her relationship with her 18-year-old granddaughter, Priya (pronounced, “Preeya”), an accomplished artist who has already amassed several awards and college scholarships.

“It was frightening to see my grandmother that way,” says Priya, as she recalls witnessing Jean’s rapid decline.

“NMO took my grandmother away from me just as we were beginning to get close.”

Growing up, Priya, and her younger sister Serena, have a “respectful” relationship with their grandmother. Jean’s a Polish immigrant who was raised in the traditions of old-world formalities between children and adults.  But, as Priya enters her teenage years, her relationship with her grandmother begins to blossom. The two are growing closer, connecting over Priya’s art and academics.  Then Jean’s NMO attack happens.

“NMO took my grandmother away from me just as we were beginning to get close,” says Priya.

Art Restores Hope

It’s January 2018. Shocked and saddened by Jean’s condition, Priya turns to her art as an outlet to regain hope.  As her high school graduation approaches, she dedicates her senior project to her grandmother, determined to raise funds for NMO research.

Priya’s art exhibition includes watercolor paintings, oils, pastels, red chalk, sketches, ceramics, sculpture and photography.

At the exhibition, she sells original prints and greeting cards, while informing her patrons about NMO.

“My guests were very interested in helping,” say’s Priya. “I also told them that 100 percent of the proceeds would go toward NMO research, and  I am very proud to say that I earned $1,800.”

“Kindred’s” Story

While researching her senior project, Priya finds a photo of a house by a lake in a magazine. She then shows the photo to her grandparents, and her grandfather, Zygmunt, immediately recognizes the house. He even knows who owns it.  It’s in his hometown of Zamość, Poland. The circumstances are unmistakable.  Priya was destined to find the photo.

Priya gets to work, using oil paint on canvas to recreate the scene.  Her talented hands capture tones and shading that make Zygmunt feel as if he’s once again standing on the bank of the lake, just as he did when he was a boy.  After weeks of work, Priya reveals it to her grandparents. Jean thinks it’s a “beautiful” symbolic expression of their relationship.

“Kindred” becomes a cornerstone piece for her exhibition, and wins first place in the district’s Congressional Art Competition. It’s currently on display at the Capitol Building in Washington, D.C., through July.

"Kindred" - oil painting on canvas of a house located in Zamość, Poland, the hometown of Priya Melonio's Grandfather. Winner, first place in a Congressional Art Competition. Currently on display at the Capitol Building in Washington, D.C., through July.

“Kindred” – oil painting on canvas of a house located in Zamość, Poland, the hometown of Priya Melonio’s Grandfather. Winner, first place in a Congressional Art Competition. Currently on display at the Capitol Building in Washington, D.C., through July.

“Hardly anyone works for NMO, so we felt she could make a real difference.”

Impacting NMO

“This is more than just Priya’s high school senior project,” says Bonita. “This is personal. Everyone can donate to a food bank, or cancer research, or amyotrophic lateral sclerosis (ALS), which are great causes. But NMO is equally as devastating as cancer or ALS.  Plus, those causes already have so many people working on their behalf. Hardly anyone works for NMO, so we felt she could make a real difference.”

Priya hopes her art will continue to help raise awareness and funding for research so other NMO patients will be able to “live a long and happy life free of pain.”

In the Fall, Priya will attend Kenyon College, in Ohio, majoring in Studio Art and minoring in Business Economics.

Priya's "Autumn Serenity" currently hangs Jean's nursing home room. It reminds her of Priya.

Priya’s “Autumn Serenity” currently hangs Jean’s nursing home room. It reminds her of Priya.

 

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