| Tenerife, Canary Islands -
Full Trisomy 13
10-07
 Update 2-27-06
Hello Friends of Trisomy 13. Itaisa is good. She has some apnea (where she
stops breathing) and it worries us. But she eats well. We are happy with
our family....and fight everyday to survive.
3-21-05
Hello, we are the parents (Aurora and Juan) of
a girl with trisomy 13 that is called Itaisa Gonzalez Gonzales. Itaisa was
born on July 29, 2000. Ita is 4 years old. She weighed 2 kilos 700 grms and
measured 52 cm in length. Throughout the pregnancy they did not detect a
problem, except for a slightly high sugar level in mom. Along with trisomy
13, Itaisa has Dandy Walker Syndrome and Tetralogy of Fallot. She has not
had any surgery. She does not see, but looks toward the sun and the light of
lamps. Her pupils are very small. She does not hear, nor speak, but she
vocalizes, "ah, ah, ah." And also cries when she wants to eat. We, together
with her 10-year-old brother Joel, are very proud of her. She smiles often
and is always very happy except for when she becomes ill. She takes medicine
for her heart, and also has apnea (she stops breathing during a time) and
for a short time ago she had convulsions, very similar to seizures, for
which she now takes medicine. Ita eats well and is not g-tube fed. Ita is
such a beautiful girl. She has physical therapy, and goes to school for to
correct her rocker bottom feet. Because she does not see or hear, she
touches everything within her reach. She is a girl wonder. We love to give
her what she wants. She loves the shower and laughs when she has one.
(translated from message below)
FOTOS Y ALBUM Hola somos los
padres (Aurora y Juan) of una niŅa con Trisomy 13 que se llama Itaisa
Gonzalez Gonzales. Itaisa nacio el 29/07/2000. ITA tiene 4 aŅos Y medio.
Peso al nacer 2kilos 700 grms y midio 52 cm. En todo el embarazo no me
detectaron ningun problema, salvo el azucar un poco alta, que con
tratamiento se me fue. Itaisa tiene trisomy 13, junto con sindrome de Dandy
walker y tetralogia de fallot. No tiene ninguna cirugia. Ella no ve, salvo
la claridad del sol y de las lamparas. Tiene unas pupilas muy pequeŅas. No
oye, ni habla, pero si valvusea, dice: ah,ah,ah. Y tambien dice mama cuando
llora. Nosotros junto con su hermano de 10 aŅos, que se llama Joel estamos
muy orgullosos de ella, pues se sonrie mucho y siempre esta muy feliz, salvo
cuando se enferma que lo pasamos muy mal, por que con su problema de corazon
tiene muchas flemas y tiene que estar tomando medicamentos mucho tiempo.
Tambien tiene apneas (deja de respirar durante un tiempo) y desde hace poco
le las combulsiones(muy parecidas a los ataques epilepticos) que toma su
medicacion para que no le den. Ita come bien, no tiene tubo para comer. LA
QUEREMOS MUCHO, ES UNA
PRECIOSIDAD DE NI-A. Va a un colegio para su fisioterapia para corregir sus
pies, pues los tenia en mecedora. Sus educadores ya estan consiguiendo que
se siente y le gusta mucho, aunque ella no ve ni olle, esperimenta con sus
manos, pues todo lo toca y todo lo que este a su alcanze lo coje. Es una
maravilla de niŅa, todos la
quieren y la miman. Le gusta mucho la ducha y que la alcen para arriba, pues
se rie mucho. canary island (Tenerife)
 |
Ironman
for Kids - The Living with Trisomy 13 Community thanks Michael
Hennessey for helping to raise awareness for Trisomy 13 and other
related disorders. 
to help update the medical literature and to improve the quality and
availability of medical care. Tracking Rare
Incidence Syndromes (TRIS)
Translation