On the night of September 8th 2011, an amazing little girl went out to dinner with her parents and brother to celebrate her 5th birthday. Her name is Demi Friedel and she is a beautiful girl, with a larger than life personality. She went to dinner that night as a normal 5 year old… she goofed around with her mother, father and brother and they all sang happy birthday to her.
4 days later her life
began to take a path that neither her, nor her family was prepared for. She was having issues with her vision and could not stand or walk or her own. She was in the JHU Pediatric Intensive Care Unit that morning. Demi was diagnosed with a brain bleed in a malformation of blood vessels on her brain stem. This happens to be the worst place to have a bleed, and due to the risks involved, Dr. Ben Carson advised that surgery was a last resort with the hopes that her body would resolve the blood on its own. She underwent several brain scans to monitor the bleed and initially the bleed was thought to have stopped. For 4 days friends and family prayed and hoped that this would be the case. They looked for signs of improvement every minute. Unfortunately, her symptoms continued to worsen. A complication of what she was going through was swelling on her entire brain caused by the fluid around her brain not being able to filter properly. As the week went on, the pressure affected her alertness and she spent less and less time awake. After a very tough 4 days in the PICU, and a second seizure, the doctors decided to perform surgery and remove the blood. The thought of losing their daughter was paralyzing for her family. They prayed to just be able to bring take her home again. Well, angels were watching over her and the surgery could not have gone any better. During surgery the doctors only saw old blood. Once the doctors removed the old blood they were relieved that there was no more bleeding, which indicated that the bleed had stopped. Also, the pressure causing the seizures was immediately relieved by the removal of the old blood. This was the best scenario for Demi. Demi and her family escaped a nightmare that all families with children of any age fear the most. She showed signs of improvement within hours after the surgery. Although small and subtle, they were a welcomed sight. Her post surgery symptoms included muscle weakness, limited motor skills on her left side and loss of movement on the right side of her face, including her right eye. But, more importantly, the larger than life personality that those who know her have come to love was back. The first day or so after her surgery, she never once asked why she couldn’t walk; she just kept trying to walk. She didn’t ask why she couldn’t use her hand the same way, she just did the best she could with what she had. She wanted to make jokes and see people laugh… that was her form of recovery. Demi is now doing remarkably well. She’s in 9th grade now and is doing things that most 15 year would do. She enjoys playing soccer, doing crafts and singing. She’s also quite the fashionista. She’s a big help to us in the planning and running of our events. However, she still deals with some motor skill issues in her left hand, her balance and the right side of her face. She has had 5 plastic surgeries over the past several years, a nerve graph and a muscle graph and some corrective surgery. Although we think she is perfect, all three surgeries are to improve her smile. The surgeries were a success and she’s now able to smile even brighter! The determination that she has shown through this is something that most people only wish they had. She tackled her therapy sessions like a champ, with no complaints. When she was spending her days at therapy this special girl was always asking about the other children and if THEY are OK and if there mommy or daddy were with them. She has the heart of an angel and the will of a lion. She is still here with us for a reason…to open our eyes to what life is all about.
