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

Por el Sendero Real

Lo siguiente fue escrito por la abuela de Thiago, donde expresa sus sentimientos y experiencias al acompañar a Thiago y su mamá en su viaje a los Estados Unidos, para consultar con médicos que especializan en tratar a Trisomia 13.

Nuestro tan ansiado viaje, comenzó en el Aeropuerto  de Carrasco Montevideo, de forma mágica con un Protocolo Real.

Para nosotros (como para todo padre o abuelo) nuestros hijos o nietos son Príncipes y encontramos almas sensibles que lo saben ver de igual forma .
Esta vez, su Séquito fueron los empleados de American Airlines, en Montevideo- Uruguay quienes sin conocerlo previamente, captaron la personita especial que es Thiagui, y juntos pudimos tener esta experiencia fantástica antes de levantar vuelo.

Desde la puerta de entrada del aeropuerto se divisaban globos y banderitas de colores marcando el sendero real hasta la mesa del chek-in. Al acercarnos nos sentimos cual un actor famoso, ya que el camino estaba sembrado de brillantes estrellas plateadas sobre las que nos deslizábamos y un cartel por detrás del mostrador nos daba la bienvenida.

Cada detalle estaba allí, pero eso no fue todo, el túnel hacia el avión comenzó con una gran arcada de globos rojos, azules y blancos, los colores de American, y al llegar a nuestros asientos, encontramos los corazones que esas manos solidarias pintaron, recortaron, pegaron, dando una muestra de amor condensado en un cartel que nos trajimos de recuerdo.

Sobre el asiento, en la pared del avión, colgaba una flor que en el centro tiene el nombre del agasajado. Pequeñas florcitas pintadas a pincel, y suaves arabescos unían valores escritos en cada pétalo como : amor, paciencia, esperanza, fe y, uno nuevo, el que esas manos no escribieron pero que estuvo palpitando en cada corazón: CARIDAD, el amor puro de Cristo, que hace que nos unamos en una causa tan noble, como ayudar a un niño a lograr su potencial.

El viaje fue perfecto, Thiagui sobrevoló con fortaleza y alegría la extensa bastedad Americana de Sur a Norte a bordo de 3 aviones. Por la ventanilla, su mirada contemplo primero, las luces de la ciudad que lo despedían, y al final del recorrido, las majestuosas montañas que lo recibían.

Al llegar a destino, nuestro corazón seguía agradecido, así que sacamos del equipaje de mano,(como lo habíamos prometido)- la bandera Uruguaya estampada con las firmas de compatriotas que se unieron a nosotros para hacer este viaje posible en tan solo 3 meses. Otra vez... la CARIDAD escrita con tinta indeleble.

Mi hermana nos estaba esperando, con la ilusión de que las pequeñas manitos de Thiago envolvieran su cuello y no la soltaran mas.

También nos esperaba nuestra amiga Juliana- una Mama - con sus pequeños. Una de las hijas de Juliana, comparte con Thiago el mismo camino. Se llama Ariana, tiene 7 años, de pelo claro, ojos celestes, y tierna sonrisa. Una niña dulce, quizás por la misma razón que Thiago, porque tienen un cromosoma de más y eso hace la diferencia.

Ser solidarios es algo que trasciende. Por eso sentimos que este viaje es maravilloso, porque las fronteras y los límites entre hermanos se desvanecen.
Los, NO SE PUEDE, los pone el hombre de poca Fe.

Hoy les podemos proclamar desde éste, el hemisferio opuesto y lejano, que nos sentimos más cerca, felices de haber encontrado gente maravillosa tanto aquí como allá, que nos ayudan a dar un paso más.

Gracias Uruguay , Gracias Estados Unidos, por dejar de lado las diferencias culturales y construir un puente que nos une.
SE PUEDE.

Gabriela Vega
28 de Agosto, 2013

Vean mas fotos en el puesto, On my way to Utah! - Airport Welcome

The next steps for Thiago in Utah

Over the next few weeks, we will see the results of the tests that have been done, the treatments recommended by the doctors, as well as doing physical therapy with Thiago. There will also be a few specialists that we will see each week. This week we will see a pediatric nutrition specialist, the neurologist, and at Primary Children's Hospital, the ophthalmologist and gastroenterologist. Please keep Thiago in your prayers and wish us luck!
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Durante las próximas semanas, veremos los resultados de los análisis que se han hecho, los tratamientos que se recomienden los doctores y realizaremos terapia física con Thiago. Habrán algunas especialistas que veremos cada semana. Esta semana, tenemos una consulta con una pediatra especializada en nutricion y la neurologa, y en el hospital de la Primaria, el gastroenterologo y oftalmologo.

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!

On my way to Utah! - Airport Welcome

Well, it's official, we have begun our long trip to Utah, and what a way to start. 

It was incredible to see how much the American Airlines employees prepared for Thiago to make his trip special. They decorated an exclusive check-in that was set up just for him. All along the way to the plane there were decorations, and at the gate, there was a balloon arch. Inside the plane were more surprises like a bed with his name on the pillows and blanket, along with balloons and other decorations. 

They also gave Thiago a special card signed by the pilots and the other employees too. It was so moving to to see all the special things they did, and how happy and excited everyone was as they interacted with Thiago. 

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Es oficial! Comenzamos el viaje largo a Utah, y que mejor manera de hacerlo. 

INCREIBLE todo lo que han preparado y como se interesaron por Thiago los empleados de American Airlines. Prepararon un Check-in exclusivo para Thiago, hicieron carteles con su nombre, globos, entre otras cosas. Cuando llegaron al Gate de acceso al Avion hicieron una arcada de globos y todo el camino hacia el avion estaba decorado, cuando entraron al Avion tambien tenian muchas sorpresas... le hicieron una manta/frasada/colcha, que tiene el nombre de el, tambien les hicieron alguna almohadones con su nombre, globos y muchas otras cosas dentro del avion. 

Tambien, los pilotos le regalaron como una carta especial con unas palabras para Thiago y la firma de todos los empleados de la compañia. De verdad que fue emocionante llegar al aeropuerto y ver todo eso, lo contentos, animados y entusiasmados que estaban esperando a Thiago.

Decision to go to Salt Lake City

Thiago has made huge advances, but his condition and risk of dying still remain. He continues to surprise us and the doctors that treat him, and that keeps us going. In Uruguay, we know of only 2 trisomy 13 cases and no one trained in treating his rare condition. Thiago's next step is to visit specialists in Salt Lake City, Utah. We are nervous and excited all at the same time for Thiago. Our current plan is to arrive in Salt Lake at the end of August, and stay for a month to see as many specialists and therapists as we can. We have so much to do to get ready!

Physical Therapy in Chile - huge steps for Thiago

Additional visits to Chile were instrumental in helping him sit up by himself, stand by himself, and take his first steps. The advances he has made may seem small to some, but for us they are amazing feats. Simple things like being able to sit by himself on a chair without falling over are small victories that improve his life so much. Over the years we have made several trips, and each has helped so much. Each trip costs several thousand dollars, so we are so grateful for all those that have helped us make it a reality!