Circle 21 and the Down Syndrome Clinic
Karen Meredith Blott and Leslie Diening (two mothers with a combined nine children … soon to be 10!) are making a difference for families who receive a diagnosis of Down syndrome. For them it’s about parents being able to focus on their newborn baby and not have to be distracted by all the questions and unknowns these two families experienced with their own diagnoses of Down syndrome.“Every dollar has an immediate impact..."
Both Leslie and Karen were shocked that a resource didn’t already exist, so they decided to do something about it.
Their answer: The Down Syndrome Clinic Initiative at SickKids, which is a donor-funded clinic that provides a holistic solution so that a diagnosis of Down syndrome doesn’t feel so overwhelming.
In its first year, the Down Syndrome Clinic Initiative has provided a one-stop-shop for families. Parents are able to gain access to more services in a much faster time frame and are able to meet all of the specialists they are required to see in the same place at the same time. This has cut down on wait lists and phone calls.
“The Down Syndrome Clinic is 100% funded by the generosity of individuals, corporations and private foundations" said Edward T. McQuillan, who has taken on the main fundraising lead for this initiative. “Every dollar has an immediate impact on the wellbeing of the children and their families. Without the support of donors, there is no clinic.
If you would like to learn more about the Down Syndrome Clinic and how you can support, please contact Edward at (416) 865-0224 x306 or emcquillan@mcquillangroup.com.
How the Down Syndrome Clinic Initiative came to be:
Karen and Leslie, who were following very similar journeys only months apart, were brought together by a physician at SickKids who had been a great resource for both women during the early days of their children’s diagnoses. After comparing notes and realizing how much information they had compiled throughout their individual Down syndrome journeys, they decided it would be beneficial to share all of their knowledge online so that other families could have the support they needed. In 2012, they created an organization called Circle 21.
“We can’t all be experts in all the areas that are important to maximize the potential of our family members who happen to have Down syndrome,” said Karen. “Circle 21 is now working with SickKids and a network of partners, such as Special Olympics Ontario and Down Syndrome Association of Ontario, to improve the systems that support a person with Down syndrome so families don’t have to be the experts.
Some benefits of the Down Syndrome Clinic Initiative:
Unfortunately, children with genetic conditions such as Down syndrome can experience poor coordination of care due to the lack of a single point of entry to the health-care system and variability among providers, programs and services involved in each aspect of the child’s care. By providing a central point of access to the health-care system, serving as a hub within the GTA for providers and educators involved in a child’s care, and acting as a central resource to other programs across the province, SickKids believes it can change the future for children with Down syndrome and their families.
Through interdisciplinary assessments, coordination of tests, sharing of information, setting mutual goals and treatment plans, the Down syndrome clinic will enable more collaborative care among providers across the continuum.
“A holistic network has been developed that not only focuses on medical conditions, but on a child’s development as well,” said Karen. “This is extremely important for a child with Down syndrome as the goal is to help integrate them into society."
Karen also believes the clinic helps to take the edge off of the diagnosis.
“The clinic sees Conrad as Conrad instead of as a patient with Down syndrome. It continually reinforces the fact that we are all different and that you should look at your child instead of the Down syndrome. There is difference all around us at SickKids and we should embrace that.”
Philanthropic dollars have been vital to the growth of the Down Syndrome Clinic Initiative. Circle 21 is committed to helping raise the funds needed and are grateful for your support.
Please visit the Circle 21 website to make an online donation today.
If you would like to have your child referred to the Down Syndrome Clinic at SickKids, please have your physician do a referral through the online referral process. If you have any questions and wish to speak with a staff paediatrician within the Down Syndrome Clinic, please contact Dr. Nirit Bernhard.
Want to learn more about Circle 21? Check out their Facebook page or website. You can also check out their recently published book “A Whole New World of Perfect,” an inspirational introduction into the world of Down syndrome.
