Meet Rosie – Optic Glioma

Rosie has Neurofibromatosis or NF1 a genetic disorder that attacks the body’s nerves with tumors and the reason she has an inoperable brain tumor; it’s called a Hypothalamic/Chiasm Optic Glioma—Diagnosed 9-7-2007. She also has Bilateral Optic Nerve Gliomas and Bilateral Optic Nerve Atrophy. At the same time she was diagnosed with brain cancer, she was also diagnosed with a second life threatening condition called Acquired Obstructive Hydrocephalus. She has a VP Shunt an internal catheter to drain built-up brain fluid from her brain. She has had 142 doses of chemo, five different kinds, 3 different protocols, 19 surgeries, approx. 40 overnight stays in the hospital, at least 27 ER visits, over 1800 shots and hundreds more pokes and the list goes on and on. Her tumor is stable, then will grow, the stable then grow, the stable. She had tumor growth a year ago, but the tumor just stopped before we were going to start chemo again (medically unexplainable) so she has been off chemo for two years!! It’s has been six year now since her diagnoses. It’s been a crazy ride, one that will never end for Rosie. She sees 15 different specialists who manage her many different conditions and rare complications. Due to the main tumors location, she also has Central Precocious Puberty, Pituitary Gigantism, issues with her heart, extreme hypertension, neurofibroma (small tumors) on her body and more. She is often teaching her doctors because they just have never seen a case like Rosie’s before. Rosie is not on chemo right now, but she still spends a huge amount of time at the hospital depending on the month and cycle of appointments; we travel downtown Chicago anywhere from 2-8 times a month. Rosie is an amazing kid, despite all she faces and goes through, knowing there is no cure, she fights everyday, but not just for herself, but for all kids with medical issues, NF, brain tumors and pediatric cancer. She started her own organization called Rosie’s Toy Box were she collects new toys for hospitalized kids. She dresses up as a blood drop and volunteers her time at blood drives. She publicly speaks at local high schools and motivates the kids to get involved. She got 150 High School students to shave their heads with her this year and raised $18,000 doing it. But that’s nothing, she has raised well over $325,000 for her favorite charities and is Chicago Dance Marathons number one individual fundraiser 5 years in a row and can’t be beat!! We have hope, we have faith and we have love in our lives. We live one day at a time and enjoy each moment!! We don’t know how long Rosie will be with us, but she is making her mark while she is here!! 🙂 Thank you for your consideration.

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Rosie’s support page

Hope Session by jessie hearn photography.  website |  facebook

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