NICKY Zahorcak, from Los Angeles, wasn’t expected to live past his first birthday when he was diagnosed with Recessive Dystrophic Epidermolysis Bullosa (known as EB) at birth.
But now, the 24-year-old has surpassed all expectations while living with the painful skin condition.
EB causes skin to blister, and even fall off if there’s too much friction.
Nicky admits it has impacted his entire body, and he can no longer walk because of the condition.
Despite this, Nicky and his mother Silvia are determined not to let the disease define him.
He’s an avid gamer and even has dreams of being a pastry chef.
Silvia lives in hope that a cure can be found for the disease, and is fundraising to help pay for Nicky’s growing medical bills.
Silvia told Truly: “Nicky has been really strong and hopeful.
When he was born, we were told we might see a cure in a decade, which seemed like forever, but now he’s 24.
I know there’s hope out there.” Nicky is also certain new research can help understand the condition, and benefit others living with the same skin disorder.
He told Truly: “I have faith there will be future developments to prolong my life and others who are suffering.” Nicky and Silvia’s YouTube Channel: https://www.youtube.com/user/PrincessSilvia/videos Silvia’s Instagram: https://www.instagram.com/ebmom/ Nicky’s fundraising page: https://www.gofundme.com/f/nicky039s-medical-fund