Zoe Rose

My name is Jessica Berger. Zoe is my beautiful 9 year old daughter.  From the moment I realized I was pregnant with her, it has been a difficult road.  Zoe was diagnosed with Autism when she was two years old and life as I knew it was over.  We we’re thrown into the world of therapies, diet changes, supplements and so much more.  For anyone that has traveled this road you know what I’m talking about.  As the years marched on, Zoe thrived, however,  her speech never developed.  She learned to use an IPad as her main form of communication and she was doing very well, often showing ME where things were.  However about a year ago life threw us yet another curve ball. Zoe seemingly out of nowhere became aggressive and began engaging in self injurious behaviors, mainly centered around her eyes. This was so uncharacteristic for her and I immediately began searching for answers. My first concern was that something neurological was going on, after consulting with a Neurologist and having a CT Scan, everything thankfully checked out fine.  This led me down a never ending road of doctors with zero answers.  We went on to see two different PANDAS Specialists (if you’ve never heard of PANDAS throw it in the google machine.)  Pandas wasn’t the answer, we saw a child Psychiatrist, a Cardiologist, spent the night in the Medical Behavioral unit at CHOP. Still no answers, bloodwork was normal, scans, X-Ray tests....all normal.  Every single specialist told me to get Behavioral Therapy.  After noticing that her left eye looked “off” I took her to an Opthalmologist. She told me that she saw a Cataract  developing in her left eye. The right eye looked good so she recommended seeing a Cataract Specialist at CHOP.  If you’ve ever dealt with CHOP you know that it takes months to get an appointment however based on her suggestion I called and scheduled our first appointment. They couldn’t see us until January(it was early November).  As we waited I noticed that Zoe was having trouble navigating steps and curbs. Her depth perception was off. I knew the only way to fix her vision was surgery, in an effort to speed the process along I called CHOP and begged them to see us sooner. They agreed to see us in late December. At that appointment the Specialist told us that she had mature Cataracts in both eyes and that her vision was equivalent to someone who is legally blind. He assured us that once we did the surgery that Zoe’s vision would be restored and in time all would be good. I left that appointment feeling like I could finally breathe and that relief was in sight. Surgery day finally arrived when I woke Zoe up I said “today is the day my beauty, we’re going to get your eyes fixed”. That morning went smoothly, Zoe handled all the poking and prodding like a champ. Before I knew it they wheeled her away and I sat in the waiting room anxiously waiting for word that all was good. The events that transpired next where like something out of a tragic movie. My name was called after thirty minutes and my heart immediately sank. I knew that was way to fast and something was wrong. The doctor took me into a small room and told me that the damage to Zoe’s eyes was extensive, more so than he anticipated. He explained that there was nothing he could do and that my daughter was now legally blind. I immediately took her for a second and third opinion and my heart broke as they each confirmed my
worst nightmare.  My first born, my heart and soul will never see my face again. She’ll never gaze at the ocean in awe or admire the clouds out of an airplane window again. So now we move into this next chapter and explore every possible option there is to support her. Private Schooling, a Service Dog, new communication devices, vision therapy, orientation and mobility. I’m learning as I go. Thank you for taking the time to read our story❤️