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Las Palmas, Canary Islands - Full Trisomy 13
 Speaks Spanish
(Need current email address)
(translated from original text below)
Hello I am called Alejandro. I live in Las Palmas de Gran Canari (Spain),
and I was born February 3, 2001 with full trisomy 13.
We are Tony and Yoana, his parents, and Laura is his older sister (12
years). This pregnancy was normal for us, but not so for the doctors, who
knew he was abnormal but they kept quiet. Everything was medical negligence
and it was denounced. The boy was born with umbilical hernia, dextrocardia,
polidactyly, club feet, a missing eye, severe hypotonia (although he already
sits). He has great cerebral damage caused by many apnea and convulsions
during the first year; thanks to God they have diminished. He is in a
special center for children with disabilities, where he is progressing, a
little slow but very effectively. He eats everything; while not chewing, it
is necessary to crush his food. He is very happy, mainly with his sister
Laura whom he loves very much. When he feels her at his side he gets
impatient and anxious because he knows that it's time to play. Also he likes
the beach and the sun, to be bathed, the waves, the sand and the rocks but
when we remove him from the sea he gets a little upset, and he voices it. He
is not violent but completely the opposite. He always smiles and has the
virtue of fixing our tense moments with his outbursts of laughter. We are
happy with him. He is more grateful than a normal boy. His teachers raffle
for him because he is so good and his personal qualities have them enamored,
just like us.
From here we want to send a big hug to our friend Maria Manuela whom
informed us of this site, and to wish her a good pregnancy and that she
enjoys her new son. They said to us that our boy would not live even 1 year.
He already has 4 and we asked ourselves who decides life? God gives life and
takes it away; medicine is advanced but not this far. We send a greeting to
all the parents and a little kiss to all the children on this site, to those
with us and those in the company of the angels. Until the next time.
From: "jose rua rua" <joato_23@hotmail.com>
''Sindrome de Patau''
Hola me llamo Alejandro, soy de las palmas (España),
nací el 3 de febrero de 2001 y tengo trisomia 13
completa.
Somos Tony y Yoana, sus padres y laura es su hermana
mayor (12 años). Este embarazo fue normal para
nosotros, pero no así para para los médicos, que
sabían como estaba la criatura y se lo callaron. Todo
fue una negligencia médica y se denunció. El niño
nació con onfalocele, dextrocardia, polidactilia, pies
equinovaros, le falta un ojito, una hipotonía severa
(aunque ya se sienta) y un gran daño cerebral que le
causaban muchas apneas y convulciones durante el
primer año, gracias a Dios se le han ido quitando.
Esta en un centro especial para niños con minusvalía,
donde va progresando,un poco lento pero muy eficaz.
Tambien come bien y de todo, al no masticar hay que
triturarlo. El es muy feliz, sobre todo con su hermana
Laura a la que quiere mucho, cuando la siente a su
lado se pone impaciente y se desespera porque sabe que
toca jugar. Tambien le gusta la playa y el sol, que lo
bañen, las olas, la arena y las rocas pero cuando lo
sacamos del mar se enfada un poco y se pone a dar
voces. No es violento sino todo lo contrario, siempre
sonríe y tiene la virtud de que cuando nosotros
estamos nerviosos el lo arregla con sus carcajadas.
Estamos contentos con el, es mas agradecido que un
niño normal, sus
profesoras se lo rifan porque es buenísimo y porque su
olor personal las tienen enamoradas, igual que a
nosotros.
Desde aquí quisiéramos mandarle un fuerte abrazo a
nuestra amiga Maria Manuela, que nos enseño esta
página y desearle un buen embarazo para que disfrute
de su nuevo hijo. Nos dijeron que el niño no viviría
mas de 1 año, ya tiene 4 y nos preguntamos que ¿quien
decide la vida? La vida la da y la quita la misma
persona que es Dios, la medicina esta avanzada pero no
llegan a tanto. Mandarles un saludo a todos los padres
y un besito muy
grande a todos los niños de esta página, a los que
están y a los que nos están viendo acompañados de los
angeles.
HASTA PRONTO
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Translation
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)