This blog post was provided by Sylvie Fraser from the Fraser Valley Down Syndrome Society.
Do you know someone with Down syndrome? A neighbour, a schoolmate, or maybe your sibling? At Fraser Valley Down Syndrome, we support families with children living with Down syndrome. To celebrate World Down Syndrome Day on March 21st, here are 10 facts you may not know about the condition:
- Down syndrome affects all races and genders equally.
- About 1 in every 800 babies in Canada has Down syndrome.
- Life expectancy for people with Down syndrome has increased dramatically in recent decades—from 25 years in 1983, to 60 years or more today.
- There are 3 types of Down syndrome:
i) Trisomy 21 — 95% of people with Down syndrome have Trisomy 21. It occurs when there are three, rather than two, number 21 chromosomes present in every cell of the body. Instead of the usual 46 chromosomes, a person with Trisomy 21 has 47.
ii) Translocation — 2 to 3% of people with Down syndrome have a Translocation pattern. Part of chromosome 21 breaks off during cell division and attaches itself to another chromosome (often the chromosome 14). Although the total number of chromosomes remain 46, the extra piece of chromosome 21 causes the characteristics of Down syndrome.
iii) Mosaicism – 2% of people with Down syndrome have Mosaic Down syndrome. Cell division occurs in one of the early cell divisions after conception, resulting in some cells, but not all cells, having three copies of chromosome 21 instead of two. When this occurs, there is a mixture of two types of cells, some containing the usual 46 chromosomes, and others containing 47.
- It is called Down syndrome after Dr. John Langdon Down who was the first person to fully describe it in 1866. The genetic cause of Down syndrome was identified by researchers in 1959.
- March 21st is World Down Syndrome Day since it is the 21st day of the 3rd month. It was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes Down syndrome (Trisomy 21).
- 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.
- Children with Down syndrome have a full complement of emotions and attitudes, are creative and imaginative in play and pranks, and grow up to live independent lives with varying degrees of support and accommodations needed.
- 50% of babies with Down syndrome are also born with congenital heart defects.
- People with Down syndrome are more susceptible for certain medical conditions including: congenital heart defects, respiratory problems, hearing problems, vision issues, hypothyroidism, low muscle tone, and diabetes.
At Fraser Valley Down Syndrome Society, there is help!
Early intervention and ongoing therapies greatly benefit a child with Down syndrome. Parents work with occupational therapists, physical therapists, and speech and language pathologists for years to help their child’s development. These therapies aid both the child’s cognitive and physical development, as well as their self-help skills. A child with Down syndrome needs much repetition and practice to develop the same skills their peers learn at a much faster rate.
Unfortunately, these therapies are quite costly. For example, speech therapy is often $120 per hour. In order for the child to progress at a consistent pace, a weekly one-hour therapy session is needed. Once a child reaches school-age, the parents are left with the monetary burden for these much needed therapies. Some families may be fortunate enough to receive some help from extended medical benefits through their work, or an at home program if their child qualifies, but many do not.
As the Fraser Valley Down Syndrome Society (F.V.D.S.S.) was started and continues to be run by parents of children with Down syndrome, we understand the financial burden as well as the emotional stress which parents of a child with extra needs endures. We offer group therapies for the children, emotional and educational support for parents, and subsidies to help defer the costs for families for conventional therapies and educational programs for the child’s development.
The F.V.D.S.S. was started in 2005 by Sylvie, a mom of a 2-year-old with Down syndrome who noticed a need in the community for a support group. The first get together was held in her home with about four other moms and their tots for an afternoon of play and chat. It went so well, that they all agreed it would be great to continue getting together.
Today, after 14 years, the F.V.D.S.S. is a registered charity with 98 members representing 75 families. Supporting families from Langley to Hope, British Columbia who have an individual with Down syndrome, and with a continued vision of making support accessible for all families with children living with Down syndrome, we do not charge a membership fee to be part of our group. All of our programs are financed through generous donations.
We know that people with Down syndrome have dreams and the determination to reach their goals. With support, many adults live independent lives, maintain jobs, friendships and are part of their community. Our donors make it possible for the F.V.D.S.S. to help make those dreams come true!