The Noble Life of Nylah

Nylah was a girl full of life and energy. She loved to do anything she was immersed in whether it be horse-back riding, camping, fishing, anything you name it. Her favorite colors were hot pink and green, she loved to read Dr. Seuss books and eat almost anything. I had the privilege of talking to Nylah’s mom, Crystal, and her brothers and aunts.

Nylah’s diagnosis with DIPG occured on June 30th, 2019 when she was only three years old. Ms. Thorpe’s reaction to the diagnosis was described as heartbroken and full of sorrow. She mentioned she had almost gone into a stage of panic. Never in their life would they have imagined a bright, young girl who never before had any struggle be affected by this deadly brain tumor.

The Thorpe family tried every way to help Nylah recover. She tried CBD treatments and radiation treatments which seemed to work at first, but ended up not being effective. The family also tried eating different foods and doing as much research as they could. Unfortunately, after 13 months and 29 days of fighting, Nylah became one of our loving angels on August 26th, 2020.

DIPG has changed the perspective of life for the Thorpe family. It has shown them that anything can happen in life. Any oddball at any time can be headed for you. All you can do is keep moving. Parents believe that their kids will grow with them, but a deadly disease can snatch them away. Crystal had mentioned that she never knew about DIPG till Nylah was diagnosed with it and it was very hard to see Nylah go through the pain. It is not like any type of cancer. “We wish more people knew about DIPG and more awareness is spread about this tumor,” spoke Ms. Thorpe. “One thing we wished for was more time. More time so we could have taken her to Brazil for a trial that was said to be effective.”

According to Nylah’s aunt, Sadie, Nylah was a unique young lady. “I always used to take her on set for some shows and everyone there loved Nylah. Whoever met her was greatly impacted and she was always smiling. You could be having a rough day, but Nylah knew how to make you happy,” told Sadie. Today we remember Nylah and strive to find an end to this deadly pediatric brain tumor.

By Niyomi Shah

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