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:

Friday, September 6, 2013

On the Royal Path

The following was written by Thiago's Grandma, where she recounts her feelings and experiences while accompanying Thiago and his mom on their journey to the United States, to consult with doctors who specialize in treating Trisomy 13.

Our long awaited trip began at the Carrasco, Montevideo airport, with an air of magic surrounding a royal procession.

For us (just like any parent or grandparent) our children and grandchildren are princes and princesses, and we are drawn to thoughtful souls that can see them the same way.

This time, Thiago's entourage were the employees of American Airlines in Montevideo, Uruguay, who, without having met him previously, engaged the special individual that is Thiagy, and together we were able to have this fantastic experience before taking to the skies.

From the moment we entered the airport, we noticed colorful of balloons, signs and banners marking the heartfelt path towards the check-in counter.

As we approached, we felt just like a famous actor on the walk of fame, as we passed over brilliant stars that were placed along our path. Behind the counter, we found a huge sign welcoming our party.

They truly thought of everything, and there was more to come. The opening of the jet bridge was framed with a huge red, white, and blue balloon arch, the colors of American Airlines. As we arrived at our seats, we found the colored and cut-out hearts stuck on every surface, that these fraternal hands had placed as a expression of love that was summed up in a beautiful card that we were able to have as a keepsake.

Above the seat, on the wall of the plane, was hanging a flower with the celebrated pasenger's name in the middle. Small painted flowers and values tenderly written by hand appeared on each petal, such as: love, patience, hope, faith, and above all, one that was not written but one that beat in every heart: CHARITY. This pure love of Christ is the thing that unites us in this noble cause, that of helping a young boy reach his potential.

The trip was perfect. With resolve and gladness, Thiagy flew over that vast expanse from South America to North America, aboard 3 different planes. Out the window, his gaze was fixed at first on the lights of the city that he left behind, and as the trip came to an end, the majestic mountains that received him.

Upon arrival, gratitud continued to fill our hearts, as we retrieved from our carry-on, (as we had promised) a Uruguayan flag covered in the signatures of compatriots that joined us in making this journey possible in a short 3 months. One more time, CHARITY, written in permanent ink.

My sister was waiting for us, with the vision of Thiago's small arms wrapping around her neck in a hug that would never end.

Also present was our friend Juliana, a mother, with her children. One of those children shares the same path in life as Thiago. Her name is Ariana, 7 years old, with blonde hair, blue eyes, and a tender smile. She is such a sweet person, which is a trait shared by Thiago; a differnence that perhaps comes from having an extra chromosome.

Being supportive requires going above and beyond. The boundaries and walls between human beings have all but disappeared. This is why we feel that this is such an amazing journey. Those of little faith will say, IT CAN'T BE DONE.

Today, we can proclaim from a hemisphere far away, and opposite our own, that we feel a little closer, and happy to have found wonderful people here, just like those at home, that have helped us take another step on our path.

Thank you Uruguay, thank you United States, for setting aside cultural differences and building a bridge that has united us. IT CAN BE DONE!

Gabriela Vega
28 August 2013

More photos can be seen in the post, On my way to Utah! - Airport Welcome

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