Down's Syndrome, also referred to as Trisomy 21, is a genetic condition in which a person is born with an extra chromosome. Typically, a baby is born with 46 chromosomes. Babies with Down syndrome have an extra copy of one of these chromosomes, chromosome 21. According to the CDC, "This extra copy changes how the baby’s body and brain develop, which can cause both mental and physical challenges for the baby." And even though many of the physical attributes of a person with Down Syndrome may be similar, "each person has different abilities."
To celebrate our local Charlotte-area families who have exceptional children, and to help those of you who may be newly navigating this world, we spoke with a few area families and are sharing their stories as well as resources here around Charlotte.
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Melissa and Aneesh Tungare, along with their son Mason (5) welcomed their daughter Caroline into the world 13 months ago. Caroline was diagnosed with Mosaic down syndrome, a rare (approximately 1-2% of all cases of down syndrome) presentation of down syndrome. When asked about this particular presentation, Melissa shared that, "Essentially, not all the cells in her body have a 3rd copy of the 21st chromosome. There is no way to know or predict which cells have a 3rd copy. What we do know is that she is worthy, bright, and strong and is accomplishing things on HER timeline.
Both working parents, finding activities that are geared towards assisting Caroline's development can be a challenge. However, the family has found tremendous support within the Charlotte area community of exceptional families. They have found support from the DSDN (Down syndrome diagnosis network) groups and look to connect with families through Gigi's Playhouse as well. "The Down syndrome association of Charlotte has also helped me connect with some really wonderful parents," she added.
Melissa said the biggest challenge for her and for Caroline is that there's a stigma surrounding children (and adults) with Down Syndrome.
"Folks are often surprised by Caroline's abilities. How we see it, Caroline, just like any other child, will have her challenges and her strengths. There needs to be more education for the community and an emphasis on inclusion."
Lauren and Jack Dantzler are very proud parents to four beautiful children: Jad (6), Jamison (5), Copelan (3) and Cohen (two months) - and Lauren exuberantly shared that "Copelan is blessed with Down Syndrome!"
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At three, Copelan is a charming little guy and has been absolutely embraced and accepted by his peers, friend and family - but Lauren does know that parents to school-aged children have often shared that there may eventually be issues with inclusion in the classroom. She's found the “Down Syndrome Diagnosis Network” to be her greatest resources.
"They do a great job supporting expecting mothers and connecting you with others," she said of the DSSN. "GiGis Playhouse is another great organization that provides activities and events for children and people with Down Syndrome. Locally, the Down Syndrome Association of Greater Charlotte has been great with connecting local families together," Lauren added.
Both moms have said that the local community of exceptional families is a tight-knit one - more like a little army of fiercely loving and supportive parents and caregivers - and one that will do anything to help each other navigate life.
Here are some resources for families navigating Down Syndrome in the Greater Charlotte area:
Down Syndrom Association of Greater Charlotte (DSAGC)
The Down Syndrome Association (DSA) of Greater Charlotte is a non-profit, family support organization. The goal of the DSA of Greater Charlotte and its families is to enable individuals with Down syndrome (Ds) to reach their full potential and become respected members of their community.
Gigi's Playhouse
We change lives through consistent delivery of free educational, therapeutic-based and career development programs for individuals with Down syndrome, their families and the community, through a replicable playhouse model.
North Carolina Down Syndrome Alliance
North Carolina Down Syndrome Alliance is an effective, compassionate, and comprehensive resource on Down syndrome throughout North Carolina. NCDSA envisions a culture in which all people with Down syndrome are empowered to achieve their full potential and live healthy, productive lives as valued citizens within the fabric of society.
Best Buddies of North Carolina
Best Buddies International is a nonprofit 501(c)(3) organization dedicated to establishing a global volunteer movement that creates opportunities for one-to-one friendships, integrated employment, leadership development, and inclusive living for people with intellectual and developmental disabilities (IDD).
Down Syndrome Diagnosis Network
DSDN is the largest national organization supporting new and expectant parents with a Down syndrome diagnosis. The mission of the Down Syndrome Diagnosis Network is to connect, support, and provide accurate information to parents - and the medical professionals who serve them - from the time of diagnosis through age 3, while fostering the opportunity for lifelong connections. Our vision is that every Down syndrome diagnosis will be delivered in an unbiased, factual, and supportive way every time, and that families can quickly find meaningful connections.
