Blind Dad's Bucket List
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Brian is a 42-year-old father of six who keeps winning the wrong lotteries. Brian was born blind. Originally diagnosed with PFVS (Persistent Fetal Vasculature Syndrome), he started life barely able to see past his nose. As a young boy, he lost all the vision in his left eye when an anaphylactic reaction to a wasp sting caused a sudden complete retinal detachment, which was later followed by severe glaucoma.
Despite that, Brian was an excellent student growing up, and landed a stable career as a computer programmer. Married to his high school sweetheart, he became the father to triplets in 1999. The triplets became a miracle themselves, surviving severe prematurity at 26 weeks to come home strong and healthy. While the triplets were still in the hospital, they were seen by Brian's own pediatric ophthalmologist, who said that there was no way they could have inherited Brian's blindness because it wasn't genetic. They were diagnosed with mild Retinopathy of Prematurity (RoP).
When the triplets were three and baby number four was on the way, Brian got laid off in the dot com crash of 2002. Blind, with three-year-old triplets and a pregnant wife, competing with thousands of other unemployed programmers, Brian struggled to find work for many months before finally landing a job...one that required him to move his family all the way across the country, from Texas to Michigan, far from family and friends. Already facing bankruptcy and foreclosure, they made the move.
Life went along smoothly for a while, steady job, new home, new babies. Then baby number six came along, and when he was two months old doctors discovered that he, too, was blind. Brian had been misdiagnosed his whole life; his blindness was actually caused by a genetic condition known as FEVR (Familial Exudative Vitreoretinopathy). This one-in-a-million disorder has a dominant inheritance pattern, and four of Brian's six children have it, including two of the triplets. All four have varying degrees of visual impairment, and everybody now has to have angiograms and sometimes laser surgery every few months to try to prevent further vision loss.
Three years later, after more surgeries, cataracts, and glaucoma, Brian's youngest child was also diagnosed with autism. With his son barely able to speak at five years old, Brian worked to raise the thousands of dollars needed to provide a 4 Paws for Ability autism service dog to his son, a constant companion that has helped immensely.
Now Brian has been diagnosed with a brain tumor. The tumor was found after Brian noticed some hearing loss in one ear. Tests showed a massive tumor had stealthily been growing in his brain. The size of a ping pong ball, the tumor is pressing against Brian's brain stem. If left alone, the tumor could kill him any day, as all it would take is a little more growth and pressure to cut off his breathing or even his heartbeat. To take the tumor out, though, will require invasive brain surgery, not just once but twice. Brian will lose all hearing in the affected ear, leaving him completely blind and deaf on one side. There is also significant risk of facial paralysis, stroke, and death during the two surgeries.
One in a million eyes. One in a million allergies. One in a million triplets. One in a million brain tumor.
Before risking his life to save his life, before losing half his remaining connection with the outside world, Brian would like to do just a few things on his bucket list. An avid (and skilled!) home brewer, Brian hoped to open a brewery someday, but the hundreds of thousands of dollars of investment needed have seemed forever out of reach with the constant medical expenses. As time is potentially running out, he would like to at least visit some famous craft breweries and talk beer with the brewers there. If our goal is reached, Brian will take a once in a lifetime trip to the Caribbean, relaxing and taking in the world with all his senses, visiting craft breweries along the way in both Michigan and Florida.
Brian has devoted his life to others, as a husband and a father. He has worked hard, overcoming disability and obstacles, to provide a home and sustenance for his family. He deserves something for himself before placing his very brain in someone else's hands.
Despite that, Brian was an excellent student growing up, and landed a stable career as a computer programmer. Married to his high school sweetheart, he became the father to triplets in 1999. The triplets became a miracle themselves, surviving severe prematurity at 26 weeks to come home strong and healthy. While the triplets were still in the hospital, they were seen by Brian's own pediatric ophthalmologist, who said that there was no way they could have inherited Brian's blindness because it wasn't genetic. They were diagnosed with mild Retinopathy of Prematurity (RoP).
When the triplets were three and baby number four was on the way, Brian got laid off in the dot com crash of 2002. Blind, with three-year-old triplets and a pregnant wife, competing with thousands of other unemployed programmers, Brian struggled to find work for many months before finally landing a job...one that required him to move his family all the way across the country, from Texas to Michigan, far from family and friends. Already facing bankruptcy and foreclosure, they made the move.
Life went along smoothly for a while, steady job, new home, new babies. Then baby number six came along, and when he was two months old doctors discovered that he, too, was blind. Brian had been misdiagnosed his whole life; his blindness was actually caused by a genetic condition known as FEVR (Familial Exudative Vitreoretinopathy). This one-in-a-million disorder has a dominant inheritance pattern, and four of Brian's six children have it, including two of the triplets. All four have varying degrees of visual impairment, and everybody now has to have angiograms and sometimes laser surgery every few months to try to prevent further vision loss.
Three years later, after more surgeries, cataracts, and glaucoma, Brian's youngest child was also diagnosed with autism. With his son barely able to speak at five years old, Brian worked to raise the thousands of dollars needed to provide a 4 Paws for Ability autism service dog to his son, a constant companion that has helped immensely.
Now Brian has been diagnosed with a brain tumor. The tumor was found after Brian noticed some hearing loss in one ear. Tests showed a massive tumor had stealthily been growing in his brain. The size of a ping pong ball, the tumor is pressing against Brian's brain stem. If left alone, the tumor could kill him any day, as all it would take is a little more growth and pressure to cut off his breathing or even his heartbeat. To take the tumor out, though, will require invasive brain surgery, not just once but twice. Brian will lose all hearing in the affected ear, leaving him completely blind and deaf on one side. There is also significant risk of facial paralysis, stroke, and death during the two surgeries.
One in a million eyes. One in a million allergies. One in a million triplets. One in a million brain tumor.
Before risking his life to save his life, before losing half his remaining connection with the outside world, Brian would like to do just a few things on his bucket list. An avid (and skilled!) home brewer, Brian hoped to open a brewery someday, but the hundreds of thousands of dollars of investment needed have seemed forever out of reach with the constant medical expenses. As time is potentially running out, he would like to at least visit some famous craft breweries and talk beer with the brewers there. If our goal is reached, Brian will take a once in a lifetime trip to the Caribbean, relaxing and taking in the world with all his senses, visiting craft breweries along the way in both Michigan and Florida.
Brian has devoted his life to others, as a husband and a father. He has worked hard, overcoming disability and obstacles, to provide a home and sustenance for his family. He deserves something for himself before placing his very brain in someone else's hands.
Organizer
Elayne Glantzberg
Organizer
Mason, MI
