This week we want to introduce Suj. Suj will be 33 years old on April 22nd. His mother recalls the day of his birth and how the news of his syndrome was delivered to them, "The news was abruptly communicated right in the delivery room by the medical team, who left the room a couple of minutes later with no words of support. No resources were provided to us."
Those brief moments are the things that inspire parents to make a difference for the ones to come, and in the path of growth of Suj as a child; his mother Sindoor, who's also a doctor, started a support group for parents called Global Connection. "This is my second family that brings sunshine to my gray days."
Almost 33 years later, that same confusing news marks the beginning of an unimaginable life. Great things have happened, doubts and concerns have turned into the strength to provide Suj with the tools to discover his personal talents and to learn to shine on his own. Before we go further in this article, yes, there's something different between Suj and a typical person, but it's not his extra chromosome. Instead, his differences are his incredible passion to perform, followed by a interminable list of achievements and awards that credit him as musical wonder.
Recently I was part of a great discussion between mothers about how to handle work when you have a child with Down syndrome. Lots of opinions and personal stories were brought to the table; we ended with a variety of different points of view. All of them are valid and realistic, as everyone's experiences are unique and based on their personal needs.
For many of these moms who are divorced or single, working after having their babies wasn't a choice but an immediate need. Some others don't depend 100% on their individual incomes, but they never gave up on the dream of pursuing their professional careers, and have found the way to balance both work and motherhood.
The devastating news of learning that your child has Down syndrome is not just related concerns about his development or learning challenges. There are all the justifiable fears that come with learning about the medical risks associated with this extra chromosome. One of the more frightening ones is that children with Down syndrome have a 20% greater risk of developing leukemia, compared to typical children.
The signs may be confusing, as many children with Down syndrome have constant respiratory infections during their first months of life. This situation may distract doctors from looking for the signs of leukemia and cause parents to lose important time that's critical to dealing with and treating this disease. Here, parents who have lived with this experience offer their stories and insights for families who are unaware of the signs, or who have just started fighting the battle with their own child.
Life doesn't stop when your child is diagnosed with Down syndrome. The paper confirming the existence of an extra chromosome is only the beginning of an unexpected journey. The challenges keep coming, and they are not always related to your child's condition, but can certainly affect your future as a family.
This week we want to share two inspirational stories of mothers of children with Down syndrome who faced their own diagnoses: both of them were diagnosed with cancer after their kids were born. Their stories of strength remind all of us that love is powerful and challenges make us grow and be grateful for life.