Kollinger's Courage With Vhl

A story to tell that started 12 years ago. We are asking for your help... Our dear Alyssea (our daughter, sister, niece, cousin and friend), who was 15 years old at the time, was diagnosed with a rare and progressive disease called Von-Hippel Lindau (VHL) Disease. Within 4 months of her diagnosis, she had to undergo two major surgeries, one on her brain and another on her spine to remove hemangioblastomas (which are aggressive bloodfilled tumors). It was just the beginning of this terrible disease with no cure. Over the past 11 years, she had additional surgeries to her kidney's and two more brain surgeries with complications, the most recent being July of this year. She just completed 5 rounds of radiation to her brain and will need to start with speech therapy. She is the strongest young lady that I know and her positive mind set has been an inspiration for so many. If you've ever met Alyssea, you'll agree that despite, all she's been through, her smile can brighten any room. There has not been enough research done on VHL and quite often it goes misdiagnosed. (1 in 36,000 people have VHL). The Kollinger Family soon learned, 12 years ago, this is inherited and can be passed down from generation to generation. Long story short, Alyssea's father, Todd, was also diagnosed with VHL ( at age 36) and he has undergone 4 kidney surgeries to remove multiple cancerous tumors. He is also living with an inoperable tumor in his brain. Alyssea's younger brother, Jason, was also diagnosed with VHL. You can imagine how emotionally, physically and financially exhausting this has been for the Kollinger family. Alyssea's Oncologist in Pittsburgh, would like her to see Dr. Othon Iliopoulos, a Genetic & VHL Specialist, at Massachusetts General Hospital. He is known to be the most highly regarded Oncologist in the United States and parts of Europe, focusing on VHL. Dr Iliopoulos would like to see Alyssea on December 5, 2016. This appointment would be extremely important to Alyssea and her family, to help learn more about this progressive disease, and also to have Alyssea placed on a treatment path that would, God willing, extend Alyssea's life. They need financial help in order to make this happen. Unfortunately, Alyssea's insurance doesn't cover medical treatment outside of Pennsylvania. They need help to pay for the consultation, diagnostic testing, and hospital stay. They won't know for sure how much hospital costs will be incurred, until they meet with Dr. Iliopoulos, but they do know it will be in the tens of thousands. We'd like to raise enough money to help cover these medical expenses for Alyssea and her family and help get Alyssea and her Mom to Boston to see the specialist she needs to see, this December. Thank you, from the bottom of our hearts, for considering a donation. Any amount would be so heartfelt and appreciated.