Piper's Brain Tumor Journey

We are fundraising to help support sweet little 4 year old Piper (a.k.a. Pip) and her family through a period of intense medical needs and challenges. 

Piper was born with an ultra rare genetic syndrome called Cohen Syndrome.  Less than 1,000 people in the whole world have this diagnosis, whose symptoms include retinal dystrophy (progressive vision loss), intellectual disability, global developmental delay, hypotonia (low muscle tone), neutropenia (low blood cell count increased risk for life-threatening infections) and joint hyper-extensibility (causing orthopedic issues and joint breakdown).

On top of the journey in receiving this diagnosis via genetic testing, Piper was also having some outlying issues not correlated with Cohen's Syndrome... In 2017 tiny Piper had a MRI done where a mass was noted, but diagnosed as a cyst that they would continue to monitor over time. Since that time more symptoms began to develop and become apparent in the form of sleep issues, temperature regulation, a blown pupil, papilledema, falling down, seizures and low blood pressure.


Her parents, Kristina and Jesse, continued pursing answers by traveling from Phoenix to San Francisco. Piper began seeing a Neuro Team out of Stanford Medical Center that specialized in the central nervous system. With the Neuro Team's evaluations they diagnosed Piper with disautonomia(nervous system does not work properly). Testing via anesthesia has been challenging and risky as Piper had coded twice coming out of anesthesia prior.  Due to this instability a 2nd MRI was not achievable till this June, the new MRI reflected that the mass had grown in size and has now been diagnosed as a tumor.  They also found that Pip is missing part of her cerebellum. Last week Piper had a spinal tap done to evaluate cranial pressure, as well as check to see if the tumor may be cancerous and metastasized. Her pressure was elevated... This has made her situation more immediate as they are worried about hydrocephalus(fluid on the brain, swelling), which can cause brain injury.

Piper is going through additional testing appointments this week to provide more diagnostic information for the Neurosurgeon, that as of right now, is recommending brain surgery for removal of the tumor.  They believe that the majority of her outlying issues are directly correlated to this tumor and its location.

Progressing Piper's treatment plan through this pandemic has been challenging with scheduling delays, Covid precautions and loss of employment for Kristina. Financial support will be needed due to loss of work during this medical crisis and for any travel arrangements that may be needed as part of Piper's treatment plan/recovery.  This family is reluctant to ask for help, but will always do whatever is necessary to provide the care needed for their Warrior Princess Piper! Piper holds a special place in our hearts and we want to see this beautiful sweet girl be better off once she gets the care she needs. As parents it is unfathomable to imagine the stress this family must be under, please give all that you can! In donations, prayers and please continue sharing this link! Thank you so much!