Hi! Shannon
My name is Sol Crespo I'm from Panama and I have a 11th months godenhar son.
He was born in march 28th, 2000. HE's healthy and beautiful. I can tell you
that at the begining this was very difficult for us (I'm 28 and my husband
34) but Alvaro Abdiel after hi's first major surgery demostraded to us that
he's is strong and he will overcome everything, and sure that your son will
do the same. I had the most horrible thinks when he was borned, today l can
say that We are blessed with Alvaro Abdiel, his our second child and his's
sister love him and protects him all the time.
I'm very please to give you any kind of support and friendship because I
know how hard is this, and fill that we are not the onlys with the problem
overcome things better.

BLESS you
Sol
----- Mensaje original -----
De: <shannonrudedog@...>
Para: <goldenhar@yahoogroups.com>
Enviado: Martes, 06 de Febrero de 2001 11:25 p.m.
Asunto: [GOLDENHAR] son with goldenhar


> This letter is to everyone out there with goldenhar syndrome or a family
> member with goldenhar. My name is Shannon, our son was born aug. 23,2000
with
> goldenhar. He spent 6 weeks in NICU and then came home. The hospital he
was
> born at told us to let him die because he was a complicated child and this
> was our first baby and we were young parents, (not to young, I'm 22,
husband
> is 29) They told us there was no hope for our baby. We started to search
> for doctors and found one in Ft. Lauderdale. Our son has had his first
major
> surgery 4 weeks ago to correct to clefts in his lip. We were told that he
> ranks #4 in severity in the usa. I would love to here from other people
with
> gs for I would do anything for my son. He is so precious to us. I know
that
> GS isn't hereditary, but I am still nervous. We decided to try again and
> have one more child. I am now 5 weeks along and scared. Any info. from
> anyone would be greatly appreciated.
>
> thank you, shannon
>
>
>
>