Help Tim Fight NPC
Donation protected
Tim’s Story
My brother, Tim, is fighting Niemann-Pick Disease Type C (NPC). NPC is a very rare and terminal genetic disease that affects Tim’s ability to metabolize cholesterol and other lipids within a cell. Excessive amounts of lipids accumulate in the brain and cause cells to shutdown, therefore affecting Tim’s cognitive and motor abilities. There are only an estimated 500 cases of this disease worldwide and about 100 in the US. NPC is always fatal.
Tim began to show symptoms years ago, but due to his Asperger’s Syndrome and the rareness of the disease it was difficult for doctors to diagnose him. The diseases has drastically progressed since I started this page. What started as clumsiness has developed into inability to walk on his own. The disease also affects his processing abilities. Tim tested in the second percentile for processing – meaning his ability to receive information, understand it and respond to it has extremely declined. This continues to decline. NPC has also caused Tim to have hearing loss requiring hearing aids.
Every two weeks my family takes Tim to Rush University Medical Center in Chicago where he gets a spinal infusion of a trial drug, cyclodextrin. Tim has done this over 70 times. While the disease continues to progress, there's no knowing how much worse it could be without the infusions.
When I first started this page, my brother was in the ICU fighting pneumonia and pleural effusion with serious complications that required surgery. He's heading back to the hospital for another surgery, but this time on his legs and feet. The goal is to make Tim's legs braceable so he can walk withe aids. I'm going to write a separate update with the details on this.
*Please note with the progression of the disease it's difficult to keep this story up to date. GoFundMe automatically lands visitors on this page, please check my updates for the most recent developments in Tim's fight against NPC.
How You Can Help
Donations will help cover the cost of the never ending medical bills (this latest hospital stay is sure to be costly), updates to my family's home to make it easier for Tim to get around (just installed a stairlift) and general cost of living as we’ve come to grips that Tim will never work again.
Thank You
First, I want to thank you for visiting this page. One more person who knows about NPC is one step closer to finding a cure. On behalf of my family, I’m humbly asking for your donations, prayers and good vibes. Any amount can help. Again, thank you.
My brother, Tim, is fighting Niemann-Pick Disease Type C (NPC). NPC is a very rare and terminal genetic disease that affects Tim’s ability to metabolize cholesterol and other lipids within a cell. Excessive amounts of lipids accumulate in the brain and cause cells to shutdown, therefore affecting Tim’s cognitive and motor abilities. There are only an estimated 500 cases of this disease worldwide and about 100 in the US. NPC is always fatal.
Tim began to show symptoms years ago, but due to his Asperger’s Syndrome and the rareness of the disease it was difficult for doctors to diagnose him. The diseases has drastically progressed since I started this page. What started as clumsiness has developed into inability to walk on his own. The disease also affects his processing abilities. Tim tested in the second percentile for processing – meaning his ability to receive information, understand it and respond to it has extremely declined. This continues to decline. NPC has also caused Tim to have hearing loss requiring hearing aids.
Every two weeks my family takes Tim to Rush University Medical Center in Chicago where he gets a spinal infusion of a trial drug, cyclodextrin. Tim has done this over 70 times. While the disease continues to progress, there's no knowing how much worse it could be without the infusions.
When I first started this page, my brother was in the ICU fighting pneumonia and pleural effusion with serious complications that required surgery. He's heading back to the hospital for another surgery, but this time on his legs and feet. The goal is to make Tim's legs braceable so he can walk withe aids. I'm going to write a separate update with the details on this.
*Please note with the progression of the disease it's difficult to keep this story up to date. GoFundMe automatically lands visitors on this page, please check my updates for the most recent developments in Tim's fight against NPC.
How You Can Help
Donations will help cover the cost of the never ending medical bills (this latest hospital stay is sure to be costly), updates to my family's home to make it easier for Tim to get around (just installed a stairlift) and general cost of living as we’ve come to grips that Tim will never work again.
Thank You
First, I want to thank you for visiting this page. One more person who knows about NPC is one step closer to finding a cure. On behalf of my family, I’m humbly asking for your donations, prayers and good vibes. Any amount can help. Again, thank you.
Organizer
Emily Marron
Organizer
Bloomingdale, IL