Down Syndrome In Lane County
Brandon and Jennifer Willis had always talked about adopting. Married for three years the two finally decided to start a family, and Jennifer became pregnant. Unfortunately 12 weeks into her pregnancy Jennifer suffered a miscarriage. Doctors told them the issue was likely chromosomal.
Jennifer would someday be able to carry a baby to term, according to her doctors, though plans had already changed for the couple. The two once again began to look to adopt, this time through Reece’s Rainbow, an adoption ministry that advocates and raises money for children with Down syndrome.
The human body is full of genetic material that is stored in genes. These genes are responsible for all of our inherited traits and are grouped along structures called chromosomes. A normal cell contains 23 pairs of chromosomes. For children who experience Down syndrome, they have either a full or partial extra copy of chromosome 21.
This extra copy alters the developmental course of the child, exhibiting itself in the physical characteristics associated with Down syndrome. The most common of these traits are low muscle tone, an upward slant to the eyes, small stature and a single deep crease across the center of the palm. Of course each person is unique and no two cases of Down syndrome will look the same.
For Jennifer, it was no coincidence that the children she now was interested in adopting had an extra chromosome after losing her first child to a chromosomal abnormality.
The two decided to adopt internationally because of the dire situation those kids face. In Eastern European countries a child born with Down syndrome faces a huge social stigma. Many of these children are orphaned at birth and once older they are sent to mental institutions. For the Willis’ the decision was easy, and they soon began the process of adoption.
While they initially only planned on adopting one child, once there they changed their minds.
“We said lets bring home two girls with Down syndrome, why not,” Jennifer said. “Lets take the plunge and do it.”
Now they are the parents of two beautiful little girls, Dasha (7) and Emily (3). Both are full of life and energy, so much so that their parents sometimes have trouble keeping up with them.
The Willis family is not alone as Down syndrome is the most common genetic condition. According to the National Down Syndrome Society, one in every 691 babies in the United States are born with it. They go on to state that approximately 400,000 Americans have Down syndrome. The condition occurs in people of all races and economic levels, though older women have been shown to have an increased chance of having a child with Down syndrome. Interestingly enough, though Down syndrome is a genetic condition, occurrences of it doesn’t seem to be tied to hereditary components.
The Willis family is unique in that they chose to take on the extra challenge of raising children with Down syndrome. Most parents don’t have that luxury and instead must go through the painful realization process that their children are not ‘normal’.
“We went into this process knowing we wanted kids with Down syndrome,” Brandon said. “So we didn’t grieve during the finding out process like a lot of families do.”
This is what Becca Hope faced when she first found out her son River had a high likelihood of being born with Down syndrome.
Hope was 20 weeks pregnant with her sixth child when she went in to have a routine ultrasound. The appointment was supposed to simply be a way to check the gender of her child, though during the checkup the doctors found abnormalities. Hope told the doctors that as a single mom at the time she wanted to know exactly what was wrong with her child. Two weeks later she received the phone call.
“They said you need to sit down,” Hope said. “I probably cried for a good day and then I said all right, here is where we learn. Here is where we figure it out.”
For many parents just like Hope, learning that your child has Down syndrome can be devastating and frightening. The best form of help they can receive is both knowledge and a support system.
For Hope the support comes from her family, specifically her mother who was with her during the revealing ultrasound. Her mother also serves as a babysitter and teacher to River during the weekdays when Hope has to work.
For families who don’t have loved ones living close by, there are several support groups they can turn to. Here in Lane County The ARC is an advocacy group that provides programs and events for families who have a child with special needs. According to their website ARC’s mission is to “enhance the dignity, expand the opportunities and protect the rights of persons with intellectual and developmental disabilities and their families.”
There are several programs focused towards helping children with Down syndrome, one of which is Emerald Family Down Syndrome Network. Started in 2006, Emerald Family gives information and training, provides connections to caregivers and puts on community activities. All of these things can be invaluable to young families who may find themselves slightly in over their heads.
Like many parents of children with Down syndrome, both the Willis and Hope families have a bright outlook towards the future for their children.
“Our dream for the rest of our lives,” Jennifer said, “is they will grow up, find a career in life that makes them happy, find love if that is what they are meant to do and be successful.”
Hope echoes those dreams when talking about her own son.
“I think the future looks great for him,” Hope said. “He will always be the one at the parties just dancing, having a good time. “