Andrew's Medical Fund

My brother Andrew, who just turned 49,  has an extremely rare genetic disease called Adult Polyglycogen Body Disease (APBD). APBD is a progressive, uncurable, untreatable disorder that results in low activity of the Glycogen Branching Enzyme (GBE1), which is used to make glycogen for the human body to use as fuel. When there is low activity of GBE1, newly formed glycogen is manufactured incorrectly into long strands called polyglucosan bodies. These bodies cannot be used for fuel (as they are supposed to) and, instead, build up inside nerve cells which causes damage to the nerves. The damage results in numbness and weakness in the muscles which leads to paralysis and inability to walk. Since the glycogen was built incorrectly and cannot be used as a normal fuel, the cells of the body needing this fuel run low on energy much faster than normal. Hence, people with APBD often have chronic fatigue, and loss of balance and sensation, Over time, individuals with APBD may also suffer from cognitive impairment. Though this disease strikes primarily those of Ashkenazi Jewish descent in their 50s and 60s, for a few people, like Andrew (Italian-American), it develops sooner in life. He became afflicted at 38, in “prime” life, robbing him of so many opportunities. 

Andrew has been living with APBD for a little over 10 years. While he was able to engage in normal activities such as working, biking, exercising, walking, navigating stairs, etc., he has been having increasing difficulty with many activities of daily living. His symptoms intensified after a recent bout with the flu this past February 2017 landed him in the hospital for three weeks. Due to his decreased stamina, chronic fatigue, neuropathy, and impaired gait, he has not been able to work or engage in life as he used to. 

Andrew could use everyone’s emotional and financial help as this disease has wreaked havoc in his life. He applied for disability several months ago but was denied due to his young age and the application reviewer's lack of understanding of the etiology and severity of his condition. His wife separated from him in November 2015. Like many others, his wife did not understand his disease, it's effects on his day-to-day, and was not supportive. Hence, he is now working with lawyers for both the appeal of the disability decision and his divorce. As a result of being unemployed, he payed out-of-pocket for medical insurance for some time (until he finally received Medicaid). Not having disability services in place, having credit card bills from 10 to trips to Baylor University medical center in Texas (for a clinical trial of a failed treatment that he was part of for the past three years), co-payments for physical therapy, paying rent alone, and, more recently, having to pay lawyer fees, he has tremendous financial strain that no person should have to worry about in life. 

Instead of being able to put energy into finding part time work and trying to enjoy as much of a personal life to the degree that he can, he is burdened with daily phone calls to agencies, applications for benefits and services, and the like. Currently, he is in the midst of moving out of his three story walk-up apartment because he can no longer afford it after exhausting savings and the burdensome three flights of stairs. This is extremely difficult for him because his mobility is severely impaired and has a lack of stamina to pack on his own. Thus, he will need to incur additional expenses to pay for movers. He will also need help paying for a motorized scooter, as this is not being covered by his insurance.

My brother is a wonderful man. He is generous, kind, intelligent, and creative. He worked as a graphic designer for the past 25 years and then pursued a secondary career in massage therapy before becoming ill. He has experienced many losses and has been dealing with all of this medical burden since he was 38 years old, when he was misdiagnosed and treated with daily injections for Multiple Sclerosis. 

For those who know my family well, you know that I had a younger sibling named Matthew who died from the child onset of this disease (Glycogen Storage Disease type 4), when he was just two years old. As such, this has taken a toll on my entire family. 

Andrew deserves better than all he has been going through and,  because of this, I am asking for your help. Any amount of money that you might be able to donate to relieve my brother of some of his financial strain,  would be greatly appreciated. Thank you friends and family for reading this! 

To learn more about the condition, search 'APBD lesson July 2016' on YouTube by one of Andrew's many doctors, Dr. Heather Lau.