Come Join us on Saturday February 9, 2019 in honor of our little superhero BROC!
Here is Broc’s Story!
Broc was born a happy healthy boy in 2007. Broc was a very happy baby. At 8wks old it was discovered that he had a heart murmur. We were sent to Riley Children’s Hospital for his first cardiac cath. At 12wks old another urgent surgery was scheduled to repair the narrowing. The day Broc turned 2yrs old he became very ill with what we thought was strep throat. He ended up being admitted to La Porte Hospital for high fever. In 2010 Broc was dx with 16p11.2 Duplication Syndrome. 2010 Cardiac cath and OHS for AV repair. 2011 Broc started to have increased right leg pain and leg length discrepancy. His right leg had stopped growing due to the lack of blood supply. In June 2012 Broc underwent an ilio-femoral bypass surgery. 2013 He was dx with Ehlers Danlos Syndrome Type 3. 2014 We then discovered that Broc had Chiari Malformation 1 and a syrinx. At the end of that year Broc was dx with CVID .Broc also had a NISSEN Procedure.2015 Broc had a revision of his femoral bypass surgery which didn’t go so well. Broc also had an NJ tube placed to see if we could bypass his stomach and just feed his intestines. Unfortunately that didn’t last long and Broc had a GJ tube placed in his belly. He also had a bone marrow biopsy to see if we could figure out his immune issues or to see if we are missing anything. Broc was eventually placed on TPN for nutrition. It was a very difficult decision to make but a needed and urgent one as Broc was still losing weight and becoming very weak at times. Broc also had a broviac central line placed in his chest. 2016 We did WES and discovered that Broc has a variant on a Gene Mutation (LTBP4). He is the only one in the World with this variant. Therefore we have no treatment or cure. New dx nurogenic bladder caused by a Tethered Cord. He was also dx with Laryngeal Cleft Grade 1. 2017 & 2018 Broc has had some serious bacterial blood infections and continues to have known and unkown viral illnesses. He was also dx with Tourette Syndrome and OCD. He also suffers from anxiety,ADHD and sensory issues. He attends OT and PT once a week to help him. He continues to receive IV Immune therapy weekly as well as other interventions to keep him stable. Broc receives treatment from Riley, CS Mott and Cincinnati Children’s Hospital.