#29DaysofAwareness February 1st

It’s February First. 

And in our house we have a lot of reasons to celebrate.

We have Miguel’s birthday.

This year, we also have Gia’s Junior Senior Prom.

It’s the month of St. Valentine. 

And it’s Down Syndrome Consciousness Month.

Here are some facts to help you understand a little bit about Trisomy 21 and our daughter Evangelina. We were not prepared for Gelli’s extra chromosome when she was born. As soon as I understood what her extra chromosome meant from the doctor, I took to the internet and read a list much like this.

I read lots of lists. I read lots of articles. I read blogs and write ups by other parents chronicling their experiences and journey in parenting.

But what I didn’t read, was a list with personal experiences. Here is “a list,” but with my personal experiences in being Gelli’s Momma.

You can also check out this page on the NDSS website where I pulled these from.

• Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. 

• There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4%, and mosaicism accounts for about 1%.

Gellibean has T-21.

• Down syndrome is the most commonly occurring chromosomal condition. One in every 800 babies in the Philippines is born with Down syndrome.

I think this statistic changes depending on the country you live in. 

• Down syndrome occurs in people of all races and economic levels. 

• The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age.

• People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.

SIDE NOTE: When I first started researching on Google, I somehow missed the Alzheimer’s part. Months after Gelli was born, I had finally gotten to a good place. I was ready to attack my new parenthood with gusto. In line with preparing for Gelli’s medical care, I started researching for doctors’ appointments and well visits to plot them in my calendar. In my research, I came across an article that told me Gelli has a really good chance of developing this debilitating disease, that already runs in my family.

I read the article in its entirety.

And stayed in bed for three days.

I take things one day at a time. I keep up with Gelli’s well visits, and just address each sniffle or symptom as they come. I have decided that I cannot spend my entire life (or Gelli’s) worrying about the what ifs. 

• A few of the common physical traits of Down syndrome are: low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all. 

These characteristics were all present in Gelli at birth. She has the Palmar Crease, slighted slanted eyes, and had low muscle tone at birth. Even her big toe is just a little bit further apart from her other toes. She was also born with Duodenal Atresia. At less than one day, old she underwent surgery to correct her malrotated intestines and by pass the intestinal obstruction.

• Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today.

• People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways.

Ok. This is why I work so hard. Inclusion in the Philippines is in its infancy. Through the volunteer work I do with DSAPI and BEST BUDDIES Philippines, and Unilab Foundation, I hope to help create these opportunities for Gelli’s generation. I want Gelli to have the ability to seek higher education. I want Gelli to find a meaningful way to contribute to society, and I want her to achieve some sort of independence, if that’s what she wants. I want so much more than the opportunities that are being afforded her, and people like her right now. 

• All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

I am sure that I will learn more about Gelli’s strengths and talents as she grows older. One strength I am sure she is capable of, it is her ability to influence change. I know that the more I share how beautiful she is, (inside and out) we will be able to subtly change people’s perception of all children with Down Syndrome…everywhere.

• Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down syndrome to lead fulfilling and productive lives. 

They say it takes a village. Our village for Gelli is growing by the minute. Even just having you read about our journey together here, your comments, your shares, and your likes on FB helps us in our cause of creating a more aware and accepting environment of ALL children with special needs.

So for that, I THANK YOU.

For the entire month of February, I’ll do my best to post every day. I want to share the ins and outs as well as  little snippets of our lives with Gelli. I will share more about the organizations that we are involved in, bloggers that I follow and look up to. My goal is to further #inclusion and create awareness of children and adults with Down Syndrome. I hope to paint a realistic, yet positive picture of what parenting Gelli has been like for me. The good, the bad, and even the ugly, but always with a positive spin. 

The Down Syndrome Association of the Philippines will lead this month long celebration of awareness. Please be sure to visit our FB group for our calendar of events.  

#29DaysofAwareness