I hope Kelle Hampton, mama to Nella, doesn’t mind a little copy and pasting in an effort to share with my five readers something that is near and dear to my heart. Miss Nella is turning three this month! Following Kelle’s blog, I have been able to watch Nella grow, hit milestones and watch her big sissy, Lainey dote on her little sister. Nella’s diagnosis of DS was determined after she was born and while she may have thrown everyone for a little loop, Kelle’s friends and family have circled the troops in order to learn more, advocate and in honor of her birthday setup a fundraiser directly to the National Down Syndrome Society.
The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. By clicking on that really cute graphic with the crown, it should take you to Nella’s fundraising page. . . every dollar goes straight to the society. Throughout the year Buddy Walks are held as a way to raise funds in local communities as well as increase awareness about Down syndrome.
I wasn’t particularly savvy about Down syndrome a few years ago until my dad started working with a wonderful organization in their local community. Since then I have attended Snow Balls, their annual musical production, random days of just hanging out with them at school as well as providing landscaping this past spring as they made a former church into a school.
If I can brag for just a moment. . . The Trousdale School was founded by Tom Johnson, whose beautiful daughter Sarah has Down syndrome (I went to school with her and her two siblings) and has this quote posted on the main page of the school’s website:
When these students are given tools, support and inspiration, they will continue to blossom and grow. Continuing education is the key to everyone’s success; having the opportunity to continue to learn broadens their horizons and allows them to soar to greater heights.
They have big dreams there, including building a dormitory in the future and growing the school to a little under 100 students. Each student has a part-time job within the community, they volunteer and most importantly, they give the best hugs and infuse happiness even in the grumpiest person’s mood. I dare anyone to walk into that school in a bad mood and come back out still in a bad mood. The students have also provided something I have yet to provide to my parents. . . they have made them the official Nanny and Popa of the school.
It really is a privilege to be a part of this community, learning about the challenges families will face, the accomplishments as well as learning about our very unpredictable DNA. I have listed below some of the facts about Down syndrome from the NDSS website.
- 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%.
- Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome.
- There are more than 400,000 people living with Down syndrome in the United States.
- 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.
- 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.
- 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, and contribute to society in many wonderful ways.
- 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.
- 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 develop their full potential and lead fulfilling lives.
If you will, please take a moment to go through the links, read a little about some of the most special people I have ever met and if you can donate a few dollars to Nella’s Triple Crown, I would greatly appreciate it.