Fundraiser
END NF
Thank you to everyone who took
part in our amazing fundraiser, it was a huge success and we exceeded our set goal!
We Continue to Fight for a Cure
Three-year-old Addison, who was diagnosed with Neurofibromatosis Type 2 (NF2) summer of 2019. NF2 is a genetic disorder that affects one in every 25,000 people worldwide. It is characterized by the development of non-cancerous tumors on the nerves throughout the body; mainly the ones that directly affect the eyes, ears, brain and spinal cord. Most cases are diagnosed in late childhood but due to a birth defect with Addison’s eye, she was diagnosed at 17 months. Addison currently has a left-side brain tumor that involves the L optic nerve and blood vessels supplying the brain along with severe scar tissue affecting her right eye, rendering it non-functioning at this time.
Further Donations can be sent to Our Lady of Hope Church in Rosemont, IL and made to Addison Gentile.
Updates
2-4-2021 — UNICORN SQUAD UPDATE ON ADDISON
Well we were able to go about a year without any major changes in Addison’s tumor treatment but we knew it wouldn’t last... Addison’s January MRI showed that her tumor started to grow again and the medication had also been decreasing her immune system so we have been discussing different options with the doctors the last month and we are working on “step 1”. Addison is currently getting a PET scan looking for the presence of a receptor that would response to a current medical treatment with the hopes to avoid another brain surgery and radiation. Addison’s strength and fierceness amazes me everyday and as we approach her 3rd birthday, I’m going to make a wish for her... that we can find a cure for NF so that all of this isn’t for the rest of her life.
