Brilen ~ Full Trisomy 13 ~ Born: December 27, 2012
Brilen was born on December 27, 2012. We had no idea at the time that he had trisomy13 and found out when he was 4 days old. We had the quad 4 screening done at 11weeks 6days pregnant to test for any chromosome disorders and it all came back negative, so this was a REALLY big shock to us. We have been in and out of the hospital his whole 5 months of life, but when you have a trisomy13 baby it will be the biggest fight in your life to get them proper medical care. We are blessed to have him for 5 months so far and love him more than life. Due to the trisomy13 he has trachamalacia, bronchomalacia, larygmalacia, pulmonary hypertension, small abnormal spot in his brain, the list could go on and on. All of you with t13 babies, NEVER GIVE UP HOPE, us as parents are their loudest voice.
We hope these stories of
children with trisomy will inspire you. From cleft lips to contagious
smiles, group of families are here to offer you support as you begin
your trisomy journey. It seems we only hear of the problems that
come with a child having Trisomy .
There is so much more to these sweet lives. Each day the living children
bring
joy to their families as they accomplish simple tasks or reach a
milestone, the angels remind us that life is short but a blessing all
the same and they will forever be engraved in our hearts. Be sure to
check back for our next story or update and until then....Embrace life
one moment at a time ~ Vanessa
No comments:
Post a Comment