hi i am devons grandmother there many things about sgs that are
unfair and unkind but there are many things about our babies that are
beautiful the dr.s told us devon could not see or hear he had
seizures apnea and low heart rate he had a trach and a j tube in
which he was fed he was 24hr care. he had club feet, low ears long
jaw and short chin he lived 1 year and 3 days there was not much we
could do about his syndrome but we loved him and decided that if a
year was all we had we would do every thing in a year that you could
do. we had christmas we had halloween in which we dressed him up in a
lions costume we laughed so hard at him he realy was cute he died 3
days after his birthday we had a birthday cake ballons and family we
have no regrets my son was his dad he was very young and his mother
was an awesome mother she was only 17 years old and could change
trachs give breathing treatments fed him with feeding tube she
accepted him for who he was in gods eyes he was perfect and in our
eyes he was perfect i'm not going to pretent it was easy devon was a
very difficut child to take care of he was at the time of diagnosis
the 17th child in the world on reported record we didn,t have much
to go on at the time but he was our special baby and we all took
turns rocking him and loving him he truly blessed our lives when the
time came for him to go his blood marrow quit making red blood cells
and platlets the dr. said with central brain disorders that the brain
sometimes tells the body to quit and most childern with this amount
of brain damage do not live long we knew from the time he was
3months old we would not have him long we belived and trusted in god
we knew god did not make mistakes . love your little one and
understand that your baby is special make the most out of the time
you have sure its hard work but what a blessing