Alex Gonzalez was born on November 12, 2012 via a quite normal pregnancy. However, at childbirth normal tests revealed that Alex had life threatening low platelet levels and he was immediately placed into the NICU at the University of Chicago (UIC). After a few weeks in the NICU, various tests, and a second successful platelet transfusion Alex was finally allowed to come home.
On January 3, 2013 the family was contacted me and was told that Alex has Smith-Magenis Syndrome. SMS is a rare syndrome and only affects 1 out of every 36,000 newborns. The number of cases within our state is also very low and there are virtually no children with SMS near Alex’s age. After Alex’s diagnosis, therapies began almost immediately via Illinois’ Early Intervention programs. Alex began a barrage of evaluations and therapies that continue to this day. Alex receives occupational, speech, physical, aquatic, and behavioral therapies on a regular basis. Virtually all of Alex’s evaluations have been general, limited in forecast, and more inquisitive than guiding. All of our health care personnel have been nothing but professional however SMS was only discovered in the late 80’s and therefore there is little that can be projected or referenced regarding SMS. Additionally, due to the abundance of additional professional care needed our Insurance has recently denied additional care requested by care givers in all of the above named specialties creating an additional heavy financial burden.
Alex is now 5 years old and is a loving, cheerful, spirited young child, with an independent personality and a strong interest in classical music. Despite his challenges, Alex has always risen to the occasion, and has made tremendous strides in each developmental area. Alex’s initial prognosis included unknown milestones for walking, eating, and speaking. Through much of his own hard work Alex is now eating on his own, walking on his own, running on his own, and is currently communicating through assisted electronic devices and modified sign language. The Gonzalez family strongly believe that Alex is capable of accomplishing any number of goals as long as he is fully supported and loved.
