Join Yan's Fight Against Chronic Illnesses

This is a brief history of Yan’s journey.

Yan was diagnosed with Choroid Plexus Carcinoma in October 2008 at Saint Joseph’s Children’s Hospital in Tampa, Florida. He was also diagnosed with Chiari malformation type II in January 2014 at the Cleveland Clinic in Cleveland, Ohio. In addition to that, he has Hydrocephalus and has had several shunt problems due to the size of his ventricles, years of medications, steroids, chemos, surgeries, and various treatments all of which caused all sorts of long-term side effects (such as headaches, GI issues, stomach aches, bowels, G-tube issues, etc). It's hard to explain because on a daily basis or even hourly basis how he feels can vary. He is a strong kid and hides a lot of pain because he fears surgery and the older he gets the more aware he becomes of his situation. He has been prescribed with a multitude of different pain meds for his chronic pain but usually, they don’t even scratch the surface which leads to him sleeping often.

This is why we have had such difficulties finding a treatment plan which works for Yan. On top of his rare brain tumor, he has to deal with different health problems which developed over the years. Currently, he is still diagnosed with 3 brain tumors (choroid plexus carcinoma) all of which are considered inoperable. He has a shunt which is currently not working. He deals with Chronic Pain, mainly headaches, which he will likely have for the rest of his life.

Yan has a history of GI issues which we are still currently trying to work out with his medical treatment team, along with the shunt.

Psychologically speaking, Yan is 10 years old though he just turned 16 on the 8th of February.

Yan has hearing aids and when they are not on he relies on reading your lips or asking you to repeat yourself since he cannot hear very well. This developed after surgeries near the auditory part of his brain. He also has a tumor near one of his ears which might attribute to why in one ear he hears less than the other.

He has a multitude of learning disabilities that keep growing surgery after surgery, med after med. He has his g-tube with which we give him feeds when he is not eating and meds every day.

His vision is slowly worsening every year. He has balance issues and small seizures that doctors say will soon become bigger. Finally, he has trouble regulating his emotions and most of the time he deals with anxiety and depression, as a lot of kids in and out of hospitals suffer from.

This is Yan’s list of active diagnoses:

Brain Tumors (Oct 2008)

Hydrocephalus (Aug 2012)

Gastroparesis (Mar 2019)

Hearing loss (Jan 2009)

Vision loss (Sep 2012)

Chronic Headaches (Aug 2012)

Neuropathy (Aug 2013)

High Blood Pressure (June 2022)

Depression (Apr 2019)

Muscle weakness (Feb 2009)

Dizziness (July 2016)

Since last June, he has had seven shunt surgeries. From those seven, five have been because of infections. At the beginning of 2024, he started with three surgeries - and with this hospital stay - he will add up two more surgeries bringing a total number to 51 surgeries in his lifetime.

We need all the support you guys can provide. Whether it be by prayers, or sharing his page, donating to his GoFund me page or sending some gift cards- anything at all would be greatly appreciated. We are going through a rough time with no end in sight- for now. Thank you all for taking the time to read this, I know it’s a bit overwhelming, I understand 100%. Most of you guys have been with us since the beginning and some of you guys might have just followed our page today. Whenever you joined our family, we want you guys to know we are thankful for everyone who came along and supported us.