Born to be rare, born to fight for tomorrow
February 15, 2023
Patient or Advocate: Nick Irwin
Disease Affiliation: Porencephaly
Hi. My name is Nick. I’m 6 foot 3 inches. I enjoy music, playing with our dog Kara, swimming & travel. I was recently diagnosed with porencephaly after going in for an X-ray & MRI scan. The radiologist diagnosed me with a porencephalic cyst, mucous retention cyst, multiple small choroid plexus cyst, & a hemosiderin deposit. On the X-ray they found thoracic scoliosis, lumbar retrolisthesis, & thoracic kyphosis. The porencephaly stems from a neonatal stroke at birth that caused many complications like concerns for microcephaly, dysmorphic features, 2 holes in the heart (both healed without treatment), cryptorchidism, multiple eye problems, etc. I have coordination challenges. My care team is a optometrist, neurologist, spine doctor, physical therapy, talk therapy, neurosurgeon, & geneticist. I’m also considering gastroenterology. This is why I’m on SSI. I want to spread awareness about porencephaly to find my village. Thank for reading my story.
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