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.