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Hi my name is Gina Pens. I have a brother Anthony who is 24 years old with a very rare disease which is called Spastic Paraplegia Type 35. He is not verbal and can't talk or walk, can answer yes or no questions well used to. Only 27 people in the whole world has what he has. There are only 2 in the US, the other being my sister. They got diagnosed just March of 2018 because no body could figure it out here in Illinois had to be sent to Undiagnosed Disease network in Nashville. HERES A LINK
Anyway, Anthony has not been home since July 8th, 2021. He has been to 5 different hospitals at this point beginning at riverside to rush to marionjoy rehab to central dupage northwestern to kindred hospital in Sycamore (most recent). Saddest part is the first hospital he was at (Riverside) was when we last heard him talk and he said "Home" little did we know he wouldn't be home since. At this point he has been in the ICU 8-9 times. Almost died several times. They keep telling us they have no idea how he's alive with one time a low blood pressure of 44 over 15 in the ICU. He has a bunch of new additions to his belly, and a trach. Because they can only do a actual ventilator for so long. He has fought this far, all we want is him home with us. He's the sweetest happiest caring boy you'll ever meet. Thank you! ❤ GOING IN 10 MONTHS NOW FIGHTING COVID PNEUMONIA!! HASNT BEEN HOME IN ALMOST A YEAR!!! 


Judy Mead
Coal City, IL

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