Lexy's Battle Against ADPS1 PIK3CD Disorder

Hello everyone, my name is Britney Potrzebowski and as most of you know, my best friends little girl, Lexy is currently hospitalized at Strong Memorial Hospital in Rochester, NY. I am here in spite of my best friend's pride to accept any form of help through this time of need and to bring awareness and support to our Lexy, who has been fighting tooth and nail with an incredibly rare genetic disorder for all 11 years of her life. Going years of being misdiagosed, passed from doctor to doctor and enduring too many hospitals stays to count, she was finally diagnosed with ADPS1 disease. We had hoped with a diagnosis would come some concrete answers, but that has hardly been the case...As Lexy gets older, the complications, severity and struggles that come with this horrible illness become harder and harder to get past. Lexy has faced many obstacles in her life because of this illness, but is currently hospitalized, this is what we know so far this visit..

She is bleeding in her GI track - cause unknown so far

She has developed calcification of her liver

Her creatine levels are too high, which puts her at risk for kindey failure and is currently on medication for this but faces a possible future of regualr dialysis

They are also struggling to keep the fluid out of her lungs dispite theyre efforts and IV antibiotic

chronic phenomena in both lungs

She has developed a mass / tumor in her left hand

She has two swollen lymph nodes in her stomach and has an Increased risk of lymphoma cancer. 

On top of being in chronic pain

She will also be getting a CT scan to determine why she is loosing carriage in he nose.

I will create a full Lexy Support page following the posting of this GoFundMe to keep you all updated on Lexy as she navigates this illness.

For now, it seems she is in the hospital more often than not, which means mom (Jodi Meisner) is right by her side... Jodi is a single mom of her two children and Lexys only support in the hospital. Please help me, help her.. no parent should be stressing how they are going to pay their bills while in the hospital with their child. Together we can help them through this and ensure the least amount of stress possible during this time, thank you all so much for taking the time to read, pray, donate or even pass on a loving message and words of encouragement. We appreciate you all so much !