For the Love of Terez in the Strength of Tyson: Hunter Syndrome
August 10, 2016
My precious Terez was born on March 30, 2002. His birth was a normal one, but at the age of two I was told he had scoliosis, and he also had multiple ear infections. As he was getting prepared for back surgery it was discovered that he had leaky heart valves. In January of 2007 he had heart surgery, after which he finally underwent genetic testing. This uncovered Hunter Syndrome. I was shocked. I just wished I could take away his pain.
My baby went through so much.He lost a lot of his intestines, was on a feeding tube and had to have 24 hour care. He was such a changed little boy. The last smile I saw from him was when he started having complications and I took him to the hospital and my baby stared at this one light. I couldn’t shake his attention from what it was that he was seeing. His mouth opened up with the biggest smile.I felt at peace, because I knew whatever he had seen was a beautiful sight. He passed away June 24,2007 at the tender age of five.
My last son, Tyson, was born on March 30, 2006, while Terez was in the hospital the genetic doctors had seen a strong resemblance between my sons and Tyson was diagnosed with Hunter Syndrome as well.
The blessing for him was that he would be able to receive the enzyme replacement drug Elaprase. Tyson also had leaky valves and surgery would be a must. He wasn’t due for surgery until January 2016. But August of 2015 he had dental surgery, and it seemed like he was just getting sicker. I took him at least eight times to the ER before finally, in September I took him there and DEMANDED some answers because what they kept saying was that nothing was wrong.
His appendix was about to rupture, he had to have surgery immediately, He was in ICU for a couple of days, we came home and my baby still wasn’t healing went back to the ER two weeks after that to learn he had infection on the valves. I was broken but would not be defeated my baby was in the hospital for 45 days. I refuse to let the hospital we were at do the surgery, basically because they had done Terez in a rush and a lot of things before doing the genetic testing.I had already been talking to UNC Chapel Hill hospital for his surgery.For once I did my research an felt comfortable. By this time my baby was very sick an on November 5. 2015 as they unhooked him from all the antibiotics we jumped out and ran straight into the waiting ambulance that took us to UNC Chapel Hill. On November 13,2015 my baby received two mechanical valves. On December 17,2015 we came home. My baby’s heart squeeze is still not at a 100% do to the stress that was put on it do to the valves being damaged but I’m so greatful that he made it and I cherish everyday of his being alive.
Sign up for updates straight to your inbox.