Thiago's Trisomy Challenge: A medical journey, from Uruguay to Utah: 2008

Living with Trisomy 13 in Uruguay

Living with Trisomy 13 in Uruguay

Trisomy 13 has been said to be incompatible with life, but Thiago is defying the odds. His home country of Uruguay has few children with trisomy 13 and no specialists to treat his rare condition, so he must travel abroad for specialized care.

Thiago's medical journey, from Uruguay to Utah:

Before Thiago was born, his parents were told he would not live. Rather than terminate the pregnancy, they left the matter in God's hands. Today, Thiago is one of the less than 10% of kids with his condition that make it past 1 year of life. Thiago has the added challenge of living in Uruguay where there are few resources for treating children with his condition. He has traveled several times to Chile to receive physical therapy, but now needs to travel to Salt Lake City, Utah to see doctors and other professionals that specialize in caring for children with Trisomy 13. Those that have helped and cared for Thiago have come to find that he has a way of giving back more than he receives.

Would you like to help Thiago? You can probably imagine that it is very expensive to travel to a foreign country to see specialists that aren't covered under your insurance. We are looking for your help to make sure Thiago can make it there, and make the most of his trip. Stay tuned here and on Thiago's Facebook page for fundraising offers, updates and ways to help, or simply donate now, by clicking the button below. All donations are deposited to the Mountain American Credit Union account #966 5337, which has set up for Thiago's medical costs:

Saturday, November 22, 2008

40 days in Neonatal Intensive Care

I couldn't believe my eyes when I saw him for the first time, lying in his crib. He spent 40 days in Neonatal intensive care. We were told that he was probably deaf, blind, and would be bedridden during his short life. Trisomy 13 is a congenital disease that means that Thiago has 3 copies of his 13 chromosome instead of the normal 2. Even though 1 in 10,000 children are born with this condition, few children that have it live past 1 year.

Friday, October 3, 2008

Thiago's diagnosis and birth

At 20 weeks of pregnancy, an ultrasound showed that Thiago had a cleft palate. Further testing revealed that he suffered from full Trisomy 13. The doctors explained the diagnosis and told us not to get our hopes up, because he most likely would not even be born. Still, we felt that he would live, so we pressed on and left it in God's hands. Thiago was born, and has changed our lives forever. He simply took us by the hand, and gave us the strength to keep fighting.