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:

















Thursday, September 5, 2013

Thiago's first week in Utah

After a long flight and so much wonderful help from so many people, Thiago finally arrived in Utah! The past week has been super busy and overwhelming. Thiago was accepted to be seen at Shriner's hospital, and we have already been working with Dr. Carey, the geneticist that specializes in treating rare conditions like Thiago's. Besides Dr. Carey, we have seen a nutritionist, neurologist, orthopedic specialist and physical therapist. They have also begun several tests to evaluate his bone density and blood, an EKG and x-rays to check up on how his previously broken leg is healing. The hospital staff has been great, and we are so grateful for all they are doing for Thiago. We owe a huge thanks to all those that have helped Thiago get to this point, so THANK YOU!

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Después de un vuelo largo y tanta ayuda maravillosa de tantas personas, Thiago finalmente ha llegado a Utah! La semana pasada ha sido ocupadisima. Thiago fue aceptado en el hospital Shriner's, y ya hemos visto al Dr. Carey, el genetista que se especializa en la patalogias de Thiago. Ademas de Dr Carey, hemos visto a la nutricionista, neuróloga, ortopedista y fisioterapeuta. También comenzaron con unos análisis de densitometria ósea y sangre, un electrocardiograma, y rayos-x para ver como se esta recuperando su pierna que se quebró en Mayo. El personal del hospital ha sido buenísimo, y estamos tan agradecidos por todo lo que hacen por Thiago. Debemos el agradecimiento también a todos quienes han ayudado a Thiago a llegar a este punto, entonces GRACIAS!

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