A Family Faces Dwarfism
My husband and I met in 1995
at a Little People of America convention in Denver,
CO. We dated for two years before marrying in 1997.
I was the youngest of ten children and he was the youngest
of two. We both were born with a form of dwarfism. I
have a dwarfism called Achondroplasia and my husband
has a dwarfism called Spondyloepiphyseal dysplasia congenita
(SEDc). We discussed the openness of having children
and the risk involved. Due to our type of dwarfism,
we both carry a dominant gene. Therefore, we knew there
would be risk of us conceiving a child with severe medical
issues and potentially terminal.
God blessed us with our beautiful
daughter, Jessica on May 3, 1999. She was born with
SEDc dwarfism. Jessica was only nine months old when
we became pregnant with our son, Alexander. He was born
on October 19, 2000. He was soon diagnosed as double
heterozygosity - meaning he carried both the Achondroplasia
and SEDc dwarfism gene.
Our doctor who specialized in
dwarfism genetics had told us that at that time there
were only two other recorded cases in history of a baby
born this way. Both of the babies had died soon after
birth. Alexander could not breathe on his own with out
help from oxygen. We had many trips to the hospital
during his life and he needed constant care. God decided
it was time for Alexander to be with Him on January
4, 2002. Alexander was fourteen and a half months old.
It took awhile after Alexander
left us before my husband and I could even think about
trying for another baby. One morning I woke up and told
my husband that I didn't want to live in fear anymore
of having a baby with needs. I wanted God's Will in
our life. We trusted Him to form our family.
We had our baby boy, Marcus
on July 15, 2003. He has Achondroplasia dwarfism. All
of our children have brought so much joy to us.
Our daughter is now ten years
old and loves to read and learning to be a great diver.
Marcus is now six and enjoys playing with Legos and
just earned his yellow belt in Tae Kwon Do.
It was incredibly exhausting
for both of us to live in fear of potentially having
a baby with terminal health issues and ultimately be
taken away from us. God gave us the grace to "let
go" of this fear and we recognized we are truly
not in control. Only in God's grace do we openly accept
the possibility of children in our future.
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