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©2017 by Hope For Marian, Los Angeles, CA

Kamryn, age 6

Albertville, Alabama

Kamryn is from Albertville, Alabama. She is the daughter of Will Brumbeloe and Kayla Miller. She is the big sister of Jax. 

 

Kamryn was diagnosed with NPC at 4 months old. At 6 months old, she made her first visit to the National Institutes of Health. Kamryn began showing NPC neurological symptoms at 1 1/2 years old; yet, she continues to persevere with bravery and happiness.

 

In December of 2015, Kamryn qualified for the VTS-270 trial. In January 2016, she began receiving biweekly spinal infusions at the NIH. She is currently still receiving these treatments, and they have changed her life! 

Kamryn suffers from almost all NPC related symptoms. Of all the symptoms, the dementia, cataplexy, and hearing loss are most debilitating. However, the treatments that she receives are helping improve her quality of life, helping her remember better, and keeping the cataplexy at bay.

 

Kamryn enjoys all things music, tea parties, painting, and princesses. She loves life and can brighten any room with her smile/laughter. She loves school, and she enjoys cheering on the Aggies. Kamryn also loves her little brother, Jax. Being a big sister is one of her greatest blessings. 

 

Life is not always easy for Kamryn, but she makes the best of life during all situations. She is an inspiration to so many. We are blessed to have Kamryn in our lives.

You can read more about Kamryn at Kure 4 Kamryn.