On July 14th, 2009, at Seattle Children’s Hospital we waited for the results of Alex’s brain MRI; waiting for our fears to be put at ease. The MRI pictures showed “Alex has a progressive brain disease and there is nothing that can be done, go home and enjoy her”. There was no easing of our fear; only the onset of the worst fears imaginable. We experienced deep despair that Alexandra did not have long to live.
Later on we learned more about Alex’s mitochondrial disease that also aims it’s destruction at the basal ganglia area of her brain; the part of the brain that supports motor development and voluntary movement, Leigh’s Complex IV. Common illnesses are Alexandra’s worst enemy; it causes her disease to progress. Whenever she starts a fever we worry if this is the one that takes her life.
Since that day, through the caring doctors, nurses, and staff at Seattle Children’s Hospital, Alexandra has received care that has changed her life from doom, to new hopes. The most recent care has come from the EPI-743 drug study. As a result of EPI-743 and through the amazing care, kindness, and treatment by Dr. Russ Saneto and his staff, Alex’s quality of life has improved. Once a puddle in our laps, she is now engaged and interactive with people and her activities. Her overall understanding of things has improved and she has started using more words. She has developed a wonderful sense of humor that is revealed in her laughter and her efforts to tease us.
Alexandra’s excellent response to the drug study has shed new light on our hopes for her and her quality of life. We know it is not a cure but we have had to add some new “To Do’s” to her bucket list. One of those was a reconstructive hip surgery which we would have never considered for her without the results of EPI-743. With the amazing work by Dr. Phil Morgan, Alex exceeded expectations of the surgery and the correction in her hips has added to her quality of life.
From that painful July day to today, from the extraordinary people at Seattle Children’s Hospital to your generous donations to the NW Mitochondrial Guild, Alex has been blessed with exceptional care and is assured of a brighter future. Thank you all!
Steve and Teresa Serex