My daughter, Angie, was born with Prader-Willi Syndrome (PWS). Although she had a great Pediatrician, a diagnosis of PWS wasn't made until she was age 16 when her teacher in Special Education called me at work one day and asked me if I had ever considered that Angie might have PWS. I had never heard of it. Her teacher sent some pamphlets home that day with Angie. I was able to check everything on the checklist, so I immediately made an appointment with a Genetics Doctor to have her tested. Her teacher nailed it. She had PWS, and I am forever grateful to that teacher for reaching out to me. Had they not contacted me, I may not have never known. Now all the accompanying symptoms made sense. Food seeking was the main concern. After I would leave for work, Angie reportedly would go through the neighbor's trash in search of food. I had to make the difficult decision to place her in supported living because I was a single parent and had to work. She lived in supported living from age 20-42. She was high functioning and had a heart of gold. She was always thinking of others. She loved spending time with her family and would bring handmade gifts for everyone. She loved her boyfriend Stevie (who also has PWS), children, animals (especially our Border Collie Mini who she called her Little Sissy), arts & crafts, fishing, yard sales & thrift stores, and so much more. She knew how to write cursive and ride a bike, and was always good at reminding me not to forget to do things. She loved anyone who showed her kindness. Unfortunately, Acid Reflux can accompany PWS, and if it happens to someone in the horizontal position, it can cause aspiration. I arrived at work on September 1, 2021 to a phone call from her support staff that she was found unresponsive that morning. EMTs were able to recover her heart beat and she was transported to the hospital, but three days later I had to make the most painful decision I have ever had to make which was to allow her to die. The Neurologist said her brain had shifted and her life was only being sustained artificially, and if I didn't make this decision, she was going to die on her own. I was approached by Holly of Mid-America Transplant. Holly brought her own story to me about losing her very young son. We cried together. I had my reserves about organ donation because I feel that Angie had no say so about donating her organs. I, alone, had to decide that for her. I felt, as giving as Angie was, that she would want to save lives. It was a very, very difficult decision for me, but I know it was the right one. She now lives on in others, in many ways. I talk to her daily and she sends me signs often that she is with me.
