Our 2 Bais Medrash boys were learning home during lockdown and their sessions were peppered with lebediga Torah arguments.

When Yom Tov arrived, 12-year-old Elisheva, who has Down syndrome, made seating arrangements for the Yom Tov meals and placed her two brothers at the 2 opposite ends of the table ‘because they argue and bother each other too much’!

Thank you so much for a most beautiful winter edition, Issue #27. I really enjoyed reading it. Each issue outdoes the previous one.

I especially enjoyed “On the Double…” It made me pause and appreciate all the gifts our daughter, Rivky, was b’H blessed with; no cardiac issues, hospitalizations, trauma, etc. May Hashem continue to bentch Yossi and Levi “on the double”!

To My Most Beloved Sister Rikki,

As Corona began to storm,
It did transform,
The definition of the norm,
But worry I did not.

There is something about Friday night that makes it a beautiful night. In addition, it is the only day of the week that I get to visit my neighbors across the courtyard that separates the two rows of houses in our development. And every week, without fail, I get to witness the special sight of Moishey Sander coming home from shul. He stops at the door, puts his hand gently on the mezuzah and gives it a loving kiss. This thirty-second weekly encounter strikes a chord deep inside of me every week anew. When I observe his tenderness to that which is real, it gets me to ponder what actually matters.

The Lucky Moms text chat was created by and for mothers of children with Down syndrome, as a means to connect.  It has been providing support, resources, information, inspiration and of course a touch of humor to each member’s day.  The Lucky Moms group is helping many of us survive these tumultuous times.  Following are excerpts of conversations from this time period.

Some of you may have heard about my twin daughters, Nechama and Batya Kuessous, both born with Down syndrome. They were actually featured in Issue #9 of Down Syndrome Amongst Us, many years ago. They are currently 24 years old.

When the coronavirus hit, I was a little worried about how it would affect them. They are generally very social and thrive on friendship and connection to other people. Every day they travel to Lakewood to The Special Children’s Center where they attend a job training program. They normally arrive home at 6:15 pm. They eat supper and then their phone is usually ringing off the hook with acquaintances offering to pick them up for slurpies, a shiur or even a short drive around town.

It is hard to believe that we are writing about our darling special brother, Yechiel Yosef a”h or YY, as he was so fondly known. He is still so vibrant and alive in my mind, smiling broadly with a twinkle in his eyes.

I am putting pen to paper in the hope that people will be inspired by what YY managed to achieve in his short lifetime and learn from it.

YY was born Shavuous 1999, just as women everywhere were lighting candles to accept the Torah and reciting the special tefilla of V’zakeini.

What is Down syndrome?

Down syndrome is a genetic disorder which affects the 21st chromosome (out of the 23 pairs present in every cell). It is caused when abnormal cell division results in an extra full or partial copy of chromosome 21; hence it is also called Trisomy 21. This extra genetic material causes the birth defects, learning challenges and physical features of Down syndrome. It was first described by John Langdon Down, a British physician, in 1866 but the genetic abnormality was only confirmed in 1959. Of note, Dr. Down’s grandson was born with Down syndrome.

About 0.7% of infants are born with some form of congenital heart disease, ranging from minor defects to complex, life-threatening cardiac malformations. This prevalence is increased to about 40-60% in infants born with Down syndrome.

“My baby has already been seen by her cardiologist, so why are we seeing another cardiologist?” This is a very common question I am asked, when I consult on a child with Down syndrome and pulmonary hypertension. Most infants with Down syndrome (DS) in the current era have been diagnosed prenatally and families do know what to expect with regards to congenital heart disease, hypothyroidism, gut abnormalities etc. But pulmonary hypertension is something that really cannot be predicted with prenatal echocardiography or ultrasound scans or by any other form of routine testing.