What This Mom Wants You To Know About Down Syndrome

March 21 is World Down Syndrome Day, as declared by the United Nations General Assembly in December 2011. 

According to the United Nations: "World Down Syndrome Day is a unique opportunity for the global Down syndrome community to connect every year, so we can:

  • share ideas, experiences and knowledge;
  • empower each other to advocate for equal rights for people with Down syndrome and
  • reach out to key stakeholders to bring about positive change."

What is Down Syndrome?

Down syndrome, also called trisomy 21, is a condition in which a person has an extra chromosome. Down Syndrome International says that "Down syndrome (or Trisomy 21) is a naturally occurring chromosomal arrangement that has always been a part of the human condition.

[It] is universally present across racial, gender or socioeconomic lines in approximately 1 in 800 live births, although there is considerable variation worldwide.

Down syndrome usually causes varying degrees of intellectual and physical disability and associated medical issues."

Meet Charlotte

Meet Charlotte! Charlotte is a super adorable, apparently spunky, 17-month-old from Ontario, Canada, who is diagnosed with Down syndrome.

At Jenny & Andy, we are a team of parents and former therapist for children with special needs. As such, we believe that it's so important to be able to support and include individuals from all walks of life, including those with disabilities.

For World Down Syndrome Day, we thought, "who better to teach us about Down syndrome than someone actually living it?" So we reached out to Charlotte's parents to learn about their experience with Down syndrome.

Check out the Q&A below!

Tell us about your family

My name is Hillary and my husband is John. We are the very PROUD parents of a spunky 17 month old who happens to rock an extra chromosome. We are currently expecting our second in May and can’t wait to see Charlotte rock the role of big sister.


Tell us about Charlotte’s diagnosis. How does her diagnosis impact her and your family?

We found out about Charlotte’s diagnosis when I was about 20 weeks pregnant. Some blood work had flagged the pregnancy as high risk. Our chances of having a child with Down syndrome increased from 1 in 1250 to 1 in 170. I remember my heart sinking hearing the genetic counsellor share that number. Now I can’t believe our luck! I am forever grateful we were the lucky 1 in 170 that got blessed with an extra chromosome. It just means there’s more of Charlotte to love!


How do you cope with extra-challenging days?

The Down syndrome community is the most loving and welcoming community. They make any tough days, better. It is so comforting to be able to not only connect with others facing the same challenges, but also knowing they would all go out of their way in a heart beat to help out any other special needs parent. It is so important to us that we try to give back to the community when we can because we are so grateful for all that they’ve given us through our journey with Down syndrome so far.


What are some common misconceptions around Down syndrome?

A lot of people look at Charlotte and see all that she can’t do because of her diagnosis. I wish more people understood that it’s not that she can’t do these things, it’s just that it might take her a little longer to get there. The sky is the limit for Charlotte and we hope she grows up knowing she can dream a dream just as big as anyone else!


Can you give us some tips on etiquette for speaking to or about someone with a disability? 

We do not like or use the R word - PERIOD. Words matter so we hope to help spread the word to end the R word!!


How can we support friends and loved ones who have children with Down syndrome or a similar diagnosis?

When a friend tells you they are expecting a child with Down syndrome, celebrate that pregnancy as you would any other. We were so often told "I’m sorry" when people heard we were expecting a child with Down syndrome. A pregnancy with a chromosomal abnormality deserves to be celebrated just as much as any other pregnancy!


What would you like others to know about Charlotte?

Charlotte has Down syndrome, she does NOT suffer from Down syndrome. She is happy, capable and WORTHY. At 17 months old, she has already taught us so much. We look forward to seeing her continue to shine her light and shatter people's expectations of those with Down syndrome.

 

You can follow Charlotte on Instagram @lifewithcharlottem!



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