BenjaminStrong_

Benjamin my nephew, was diagnosed with DIPG this is a brain stem tumor on Feb. 15, 2019.  About 300 children a year between the ages of 5-9  are diagnosed.  Benjamin always met his milestones when he was born.  When he turned three, I noticed he had his speech delayed.  So we started with speech therapy.  When he started prek he was placed in a Special Education program.  In this program they worked one on one with him to help progress his speech.  We thought his speech was delayed because of hearing difficulty.  He has had two surgeries to place tubes in his ear and with each procedure we hoped for his speech to improve.  In the Fall of 2018 we began to notice he was being clumsy and falling more than normal for him.  His doctor referred him to a neurologist because of his speech delay.  On Valentine's Day the doctor evaluated him and immediately admitted him to Miami Children's Hospital.  The doctor found he had symptoms of paralysis in the right side of his face.  A CT Scan confirmed he needed an ETV Endoscopic Third Ventriculostomy.  This procedure is done to improve pressure and flow in the brain.  Doctors detected with an MRI he had a tumor the size of a golf ball in his brain stem.  The surgery went very well.  His prognosis  is devastating.   Benjamin is going to have radiation.  In order to reduce the tumor he will receive 30 rounds of radiation for 6 weeks.  Each treatment will take about 4 hours because he will need to be sedated.  The doctors have also recommended an experimental drug called, ONC201.  We are hopeful this will attack the malignant cells.   My sister Gabby, his mother plans on taking time off from work to support her son benjaminstrong_ through this process.  The donations will cover their living expenses during this process of radiation treatments and doctors appointments. We are grateful for any donations and prayers.  Everyone, please help us pray.  We are praying for a miracle!