My name is Lisa Ksiazek. My best friend, Shelly Beck, and I were both pregnant in 1992. This was the second time we were pregnant together. We both experienced normal doctor visits; our hopes were high for healthy and happy babies. However, on July 17, 1992, Joseph Alexander Beck (AKA Bubba, AKA Superman) was born with Holoprosencephaly. Holoprosencephaly is a cephalic disorder in which the prosencephalon (the forebrain of the embryo) fails to develop into two hemispheres. Normally, the forebrain is formed and the face begins to develop in the fifth and sixth weeks of human pregnancy. Doctors told Shelly that Bubba had a very short life expectancy.

Being the loving mother she is, Shelly decided to put her family before everything else and became Bubba’s caregiver, instead of receiving in-home care. Caring for Bubba, as a single mother, has consumed all Shelly’s time. Bubba survived well past initial life expectancy, and is currently one of the longest living Holoprosencephaly survivors doctors know of in the United States.  He is currently 24 years old.

Bubba was admitted to the hospital on September 19, 2016 and was transferred to the ICU two days later. Bubba’s physician will soon perform a tracheotomy which requires a minimum of two weeks rehabilitation in the hospital. Since Bubba’s first day in the hospital, Shelly has had no income and limited resources.

I’ve been best friends with Shelly since I was 15 years old; she has never reached out to others for help, nor would she. I decided, after hearing her vehicle’s transmission failed, that I needed to find a way to help. The best way I can help is to reach out to others, share her story, and hope to get her through this very difficult time. I would greatly appreciate any donations to help my friend.