Hi, I'm Sara (NF fighter too) the Momma of Claire and this artwork is in memory of my warrior daughter Claire. This bear represents my sweet Clairebear and her love for teddy bears, walking away. Gray was her favorite color along with pink. Her entire journey we called "Hope4Claire". She was diagnosed with NF at 9 months old and at 1yr's old with an optic glioma and underwent multiple rounds of chemotherapy and 8 brain surgeries in her short life, a hip tumor surgery to remove a plexiform as well. She had many deficits due to the effects of the NF but she never complained, had the brightest smile, and stole the attention of a room when you walked in, her smile would make you smile and her laughter was healing, a jokester, a lover of Starbucks hot cocoa, sweat pants, hoodies, summer camp, being in the sunshine and Jesus. Her favorite Bible verse is Philippians 4:13 I can do all through Christ which gives me strength, and that she did each and every day. She fought hard... her journey was not easy and in Oct of 2022 she became very lethargic and was rushed to the hospital in Ohio. Her neurosurgeon rushed her into emergency surgery to put an external drain in and she was put in PICU for the night and early the next morning she was taken back for another surgery to remove what they could of her tumor 7 hours later I was told "everything went as expected she did great BUT but it's looking high-grade stage 4 high grade" from that moment on I don't remember much. When pathology came back it was shown she had a malignant intracranial nerve sheath tumor aka MINST and more commonly known as MPNST extremely rare, no cure, growing at an extraordinarily rapid rate. I declined the only option of radiation and brought her home and loved her BIG TIME. She passed away on February 20th, 2023 at home. I miss my sweet daughter more than I could ever write. I want more awareness of these rare deadly brain tumors. Always smile like Claire, big and bright.

Original Artwork (5"x7") by Sara Jordan for SketchNF Spring 2023

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