Anastasia suffered from an optic chiasm glioma that caused diabetes insipidus.
Two-year-old Anastasia Rafter from Niagara Falls, NY, was diagnosed with an aggressive tumor in her optic chiasm on December 20th, 2016 at 8 months old. The tumor caused her to go completely blind. She failed all standard chemotherapy and underwent surgery in October 2017 where 50% of her tumor was removed but the surgery destroyed her pituitary gland.
Anastasia developed diabetes insipidus (DI) and was severely dehydrated, causing a large blood clot in her brain and and loss of the use of her left side. She was unable to eat or drink and eventually stopped talking and smiling.
Anastasia spent a total of 98 days in the hospital due to unstable sodium levels and aggressive tumor growth. In December 2017, her family was told she would not live much longer.
Ana eventually was able to go on a trial on a compassionate care basis. Miraculously, the tumor began to shrink at a rapid rate. She gained movement of her left side, eats and drinks in her own, has lots to say and is beginning to stand again!
She has proven to be strong, but DI has been a challenge over the past year. She has had many stays in the hospital from drastic drops in her sodium. Anastasia has been amazing fighting back against a cancer that most doctors didn’t think she could stand a chance against.
Ana lives six hours from her treating hospital and her local hospital is unfamiliar with managing DI. According to her mother, Lenee, “Anastasia has endured so much in her short two years of life. December 2017 she was given only two months to live. She fought long and hard and continues to fight but diabetes insipidus has become one her greatest challenges. The [blood analyzer] would be life-changing.”
Thank you to our donors for your continued support to help families and survivors like Anastasia. We hope having this device on hand will help this sweet little girl continue to beat the odds.
