Bella Barberena

Oh, my goodness, this story just breaks my heart. Two lives taken much too soon and a beautiful story told by a loving mother...

Our Beauty Queen was robbed of what could have been a world-changing life...
Bella Mia Barberena was born on 2/4/2011 and was joyfully welcomed by our family & we were just 10 months into grieving the death of our first born, Bradley Barberena, who passed of unknown causes at 61 days old and never got to come home from the hospital. Bella was healthy, strong, and loud. She had almond shaped brown eyes, silky soft brown hair, and a smile that melted your soul. She always had a calm disposition and observed everything with such a thirst for knowledge. My pregnancy was a peaceful and uneventful one. Since my first child passed of unknown causes my pregnancy with Bella was monitored every 2 weeks and nothing ever showed abnormal. I had every test performed, every blood draw taken, and every ultrasound done but I was never offered SMA genetic screening. I had no family of it so why would I need it? If only the doctors understood that hardly anyone ever has a family history of SMA. Bella stopped kicking her legs at 2 months old, never held her head up unsupported, and began drastically loosing weight because she could no longer swallow her milk. After about 20 pediatrician visits, physical therapy classes, and neurology appointments we heard the words Spinal Muscular Atrophy for the first time and it was clear we were going to loose our second child as well. Only this time we had a diagnosis. We were devastated but determined to fight our fate. We did our homework, got Bella all the care and machines she needed, and decided she we would not only help her fight SMA but we would help her thrive in her new life and enjoy every second she had of it. Bella was best know for her beauty, her smarts, and her joy. She loved dressing up and wearing crowns, learned sign language at 5 months old, and greeted every new face with a beaming smile. Bella joined her brother in Heaven on 11/15/2009 at only 11 months and 15 days old. Beauty Queens are few and far between but Beauty Queens who delight, inspire, and are fearless bless this world only once in a million years. Bella Mia was the one in a million. We miss, honor, and love our Beauty Queen.