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Posted at: 11/16/2009 8:44 AM | WHEC.com Deadly diagnosis mix-up
Here is the letter her grandmother sent to News 10NBC that tells the roller coaster of emotions her family has endured. I share this story with great sadness and pain, but feel that awareness is of great value. This story is about our granddaughter, McKenzie May Fredrick. She was born 12/20/2007 and is 18 months young. A beautiful little angel. Since birth she has been unable to eat. At two months young she was admitted to the Phoenix Children’s Hospital where she was seen and treated by a variety of specialist. McKenzie spent five long months of grueling test and procedures and doctor’s had no answers as to why she couldn’t eat and was failure to thrive. McKenzie is fed through a Broviac that was inserted into her chest by her heart. Through this, she is fed nutrients (TPN and Lipids which are vitamins and fats). She also underwent several procedures and had a G tube, J tube, and ultimately a GJ tube with no results. McKenzie still could not feed. During her stay at Phoenix Children Hospital when McKenzie was three months young, the doctors we’re leaning towards the possibility of McKenzie suffering from a mitochondrial disease. A muscle biopsy from her thigh was done. For eight long weeks mom & dad waited for the results. Wondering what the future of their lovely baby girl holds. Then the worst possible news. They were told McKenzie Mom & Dad have been told that this is a very rare and unique case. Doctor’s have never had a case like hers. McKenzie has made history, but not in a good way. Although always ill, McKenzie always seems to surprise us all with her will to survive. She has endured, what most of us will never endure in a life time. Since two months young she has been on Morphine for pain as well as numerous other medications. Her beautiful smile which we only occasionally see has compelled me to tell her story. The family has relocated back to Rochester New York (native home) to prepare for McKenzie’s funeral. McKenzie is currently being seen and treated at the Golisano Children’s Hospital in Rochester. She is constantly admitted for staff infections as well as her tubes coming out. McKenzie now is twenty three months young. She is walking, talking, acting like a normal child. For eleven months mom and dad have urged and plead the doctors for a second muscle biopsy. They believed McKenzie was progressing and did not have a mitochondrial disease and requested she be sent out to Dr. Kerr at Rainbow Babies Children Hospital in Cleveland Ohio who specializes in mitochondrial diseases. The insurance company was in favor of a second biopsy but not the doctors. Finally after a long battle with the doctors and McKenzie’s parents threatening to just take McKenzie to Cleveland through the Emergency department the doctors signed a referral for the biopsy. On August 3rd. 2009 McKenzie arrived at Rainbow Babies Children Hospital in Cleveland Ohio. Dr. Kerr and his team performed the biopsy and McKenzie was released three days later. Then the long wait. Eight weeks later we received a call from Dr. Kerr himself stating McKenzie did not have any form of mitochondrial disease nor did she ever. Per Dr. Kerr’s recommendation to stop all McKenzie’s drugs, and attempt to feed her by mouth. McKenzie is now off all her medications. Her Broviac is gone and she is feeding through her G tube. She is visited once a week by a therapist who is working with her in teaching her how to eat by mouth. (Thank God for Dr. Kerr and his outstanding team) What went wrong? Why was this little girl subjected to so many Surgeries, Procedures, X-Rays, Cat Scan’s, MRI’s, toxic medication’s Anesthesia, antibiotics, et...How can such a devastating diagnose been given in error. The family has prepared for a funeral that was never to be (Thank God). The Insurance company was spending 7,000 a week on McKenzie’s medical Supplies (she’s 23 months now) not to mention Hospital admissions, ER and routine doctor visits (which included specialist for heart, kidneys, bladder, eyes, brain, nervous system, bones, liver, etc…) The family had to receive counseling not only for themselves but for their 12yr.old daughter (they also have a 3yr. & 2yr old).They want answers but the doctors seem to have taken a code of silence. I send you McKenzie’s horrific story and pray you take interest in it. No parent should ever have to endure such a nightmare. For more Rochester, N.Y. news go to our website www.whec.com.
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This is an emotional story of a little girl named McKenzie May who now lives in Rochester. At a very young age, she was very sick. Her parents learned from McKenzie's doctor that she would die. But with a second opinion the little girl now has a second chance at life.
suffers from a very rare mitochondrial disease called cytochrome c oxidize. They continue to say it’s a progressive disease with no cure. McKenzie would go blind, deaf, would not walk, talk and would die before the age of two. McKenzie was released from the hospital on numerous medications and was also suggested that mom & dad place McKenzie in hospices since there were other siblings in the house and McKenzie required twenty four hour care.