Alex lives in St. Louis, Missouri with his dad, Brandon.
Have you ever heard of IPEX Syndrome? Neither had we, until after a two year search starting at age three of our son, Alex’s, life. He had complicated muscle issues and other bizarre symptoms and it took everything from countless tests, biopsies and finally, genetic testing before now eight year old Alex was diagnosed with this extremely rare and mostly unheard of condition.
There are less than 200 diagnosed cases in the entire world, most children die within the first two years of life and currently there are believed to be only three or four known survivors of IPEX. In Alex’s case, due to a FOX-P 3 genetic disorder, his regulatory T-cells are damaged and do not stop working after fighting an infection, but continue on, out of control and attack his tissues and organs.
He has had diabetes since age three due to IPEX destroying his pancreas and currently is hospitalized with a serious viral infection that has affected his left lung, digestive track and has cause serious complications with his diabetes. He is currently receiving gammaglobulin infusions, antibiotics and steroids in an attempt to kill the virus. Unfortunately, so far, we’ve had very little success.
This week, Alex was placed on the Bone Marrow Transplant Registry, but doctors say it may be a long time before a viable donor is found. In the meantime, his friends and family continue to pray that Alex will survive the current infection and any future complications until a donor can be found. To prepare for and following a BMT a patient must be quarantined, usually given chemotherapy and attempt to live in a germ free world until a BMT and until their “new immune system” proves successful.
This requires lengthy and expensive medical care. A fundraiser is underway through www.gofundme.com to raise money for Alex’s medical expenses prior to, during and after a BMT.
Please see: https://www.gofundme.com/k4x47sfu for Alex’s updated story. Please pray for Alex and if you would consider being a BMT donor, please contact www.bethematch.org.
You may be the one to save Alex’s life.