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    Hi, I’m Krista.

    Strategic communicator and storyteller.

    I am the wife of a very talented musician who takes me around the world in pursuit of excellence. Mama to Jakob, Audrey and Ella, who just happens to have Down Syndrome.
    And an aspiring disciple of Jesus, defender of the oppressed, writer, graphic designer and photographer.

    I write and speak on navigating through the fog of life…you know, when things don’t go exactly as planned and am fuelled by a passion to amplify the voices of those on the margins…
    oh, and coffee…lots of coffee.

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My Favourite and your favourite posts about Down Syndrome.

November 5, 2014
This will probably be my last post for DS awareness this year so there is lots to cover. 
First a couple of housekeeping items:
Don’t forget to enter to win this beautiful doll created by Ashton-Drake in honour of DS awareness. I am so grateful that they are concerned about creating DS awareness as an organization and are graciously making Joy available to all families. Just leave a comment on this post.
Also, in honour of Canadian DS awareness week in Canada, which is November 1-7, all profits from my Stella and Dot sales will go to the Canadian Down Syndrome Society. This is a great organization which provides support and resources to parents, individuals and professionals, fights for an inclusive Canada and encourages and empowers self-advocates (individuals with DS). This is just in time for Christmas, so take a look at www.stelladot.com/kristaewert. With a tonne of items under $60 there is something for everyone. My personal recommendation are these simple but elegant bracelets, great for teachers’ gifts, stocking stuffers or just a token to say, “I’m thinking about you.”
And finally, while I missed the cutoff to be a Christmas Warrior I want to share with you this amazing cause. Reece’s Rainbow has always held a special place in my heart. They are a Down Syndrome Adoption ministry who work to bring orphans with DS, and other disabilities together with their forever families. Many of these children come from countries where medical resources are limited and they can not receive the treatment they need to live. Please, please, please consider donating to one of these beautiful children this Christmas.
Without further ado, here are some of your favourite posts on Down Syndrome:
6 Things You May Have Said to a Parent of a Child with Down Syndrome That You Shouldn’t Feel Bad About

Mothering a Child with a Disability: The Secret Thoughts Part One
This was part of a series, see the linkedin widget below to see more or click on the tag “Mothering a Child with a Disability”

How Having a Child with Down Syndrome Has Changed Me

And finally, for those of you who are unsure as to what exactly Down Syndrome is, I have pasted this previous post on what Down Syndrome is, in my words. I hope you all have a wonderful week. Thank you for reading!

So What is Down Syndrome? An Introduction

Many people know what Down Syndrome looks like but they don’t know what it is. For better or worse individuals with DS wear it on their face through their flattened bridge, button nose, larger tongue and short neck. Talk about judging a book by it’s cover.

Did you know that there are actually many types of Down Syndrome including Mosaic Down Syndrome, Trisomy 21 and Translocational Down Syndrome?

Ultimately, it is a genetic disorder in which there is a variation with the 21st set of chromosomes. While most people have 23 sets of chromosomes each consisting of a pair, people with Down Syndrome have a third copy of the 21st chromosome, bringing the count up to 47 from the regular 46.

In Mosaicism, which comprises 1-2% of all cases, only some of the cells contain this 3rd copy whereas others do not and contain only the regular 46 chromosomes. Translocational DS accounts for roughly 4% – in this case, the extra copy of chromosome 21 attaches to another chromosome, usually the 14th, maintaining 46 chromosomes but with the genetic material still being altered because of the additional 21st chromosome. Trisomy 21 however, is the most common with 95%. This is what Ella has.

All the “symptoms” of DS then are a result of that extra chromosome. At the simplest level, (and what I believe to be an effective way of explain DS to children) it is like this: imagine you are making a milkshake. You put in some ice cream, banana and strawberry, maybe even some chocolate. But one day, you decide that you want more strawberry. Not only does your milkshake now have a redder colour, but it is also a little bit more gritty because of the seeds and tastes a bit different: no worse or better but just different (again keep in mind this is on the most basic level). Because of the abnormal third copy, it means that there is an excess of all the genetic material contained in the 21st chromosome. For example, the duplication of Amyloid precursor protein has been found to cause an early onset of Alzheimer’s Disease.

This is just one of many conditions that people with DS face. Other features and conditions can be found here. If you have followed Ella’s journey, though, you can see that not all individuals are affected in the same way. While Ella exhibits some physical signs such as brushfield spots in her eyes, a palmer crease and small folded over ears, she has been fortunate enough not to have bowel problems, or a heart condition which required surgery.

There is no treatment for Down Syndrome, only the conditions that it causes. While there are many theories about supplements to offset the extra genetic material, they have not been scientifically proven. Early Intervention is the best possible thing that can be done for children with Down Syndrome. We are discovering more and more that individuals with DS have a greater potential than we give them credit for – they just don’t always learn or express themselves in the same way as their peers. But they are no less able…just look at Ella *wink*.

More from my site

  • A brief interludeA brief interlude
  • Updates.Updates.
  • Keep Your Head UpKeep Your Head Up
  • Stay AliveStay Alive
  • Run Up For Down Syndrome: This SUNDAY!Run Up For Down Syndrome: This SUNDAY!
  • Mothering a Child with a Disability: The Secret Thoughts on SpeechMothering a Child with a Disability: The Secret Thoughts on Speech

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Down Syndrome

Krista

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  • About Me

    Hi, I’m Krista.

    Strategic communicator and storyteller.

    I am the wife of a very talented musician who takes me around the world in pursuit of excellence. Mama to Jakob, Audrey and Ella, who just happens to have Down Syndrome.
    And an aspiring disciple of Jesus, defender of the oppressed, writer, graphic designer and photographer.

    I write and speak on navigating through the fog of life…you know, when things don’t go exactly as planned and am fuelled by a passion to amplify the voices of those on the margins…
    oh, and coffee…lots of coffee.

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