A Nepalese child with Down syndrome
January 24, 2014
It has been far to long since we have shared so today we are bringing a special families story to you. Please leave some words of support and encouragement for this family.
A Nepalese child with Down syndrome
I am Hari Koirala from Rochester, New York, USA. I migrated from Nepal in 2008 with my wife. Our daughter, Priyanka “Pari” was born with Down syndrome (DS) in November 2012. There were no complications during my wife’s pregnancy except that she was two weeks early. We found out only an hour after Pari’s birth and she had to be admitted to NICU due to breathing difficulties. I noticed that her facial features were different from that of our other children at birth. I questioned this to her doctor and blood tests later confirmed her diagnosis of DS.
This was quite unsettling to us. We were not afraid of DS, but our community. It was very difficult for my wife to cope because most Nepalese community believes that DS is a curse due to our sins, or bad karma. Fearing what people would say, we decided to keep everything confidential between us and Pari’s doctors. It took us a year to finally open up about it and to have the strength to stand up for our daughter and educate our community about DS. Opening a facebook page was our first step.
DS is no one’s fault. It’s neither a curse, nor a disease, due to pills, or over working during pregnancy. Down syndrome is a genetic disorder which has the presence of an extra copy of chromosome 21 which begins at the start of pregnancy. A baby is supposed to be born with 46 chromosomes whereas a DS baby has an extra copy of chromosome 21 resulting in 47 chromosomes. This extra copy changes how the baby’s brain and body develop resulting in both mental and physical challenges for the baby. Although Pari will be delayed, it doesn’t mean that her, or our dreams for her should stop there.
We believe Pari being born with DS, was God’s unique gift to us! We cannot imagine life without her and hope our community will work with us to raise awareness for DS.
Hari Koirala
Pari’s Facebook blog: https://www.facebook.com/suryodayadownsyndrome
Friends, Pari is going to be having surgery very soon, we encourage you to keep up with this little ladies story by liking her Facebook page.
Thank you very much for sharing your story with us Hari, and even more thank you for spreading awareness to your culture. Pari is changing the world and we are so proud of you all!
xoxox
Thank you Thank you so much for sharing your story with us!!! The Rochester group is coming to GiGi’s April 5th!!! I hope you will be able to come too can’t wait to meet you all!
Xoxo Ally
The article is very nice. I hope it create awareness to our community. Children with DS r really a gift from god as u say is absolutely right.
The article is very nice. I hope it create awareness to our community. Children with DS r really a gift from god as u say is absolutely right.
dont worry bro. we r with u and pari.
Dear Friends,
“Delegates” from our GiGi’s NYC family will be on hand at the 3rd World Down Syndrome Day Celebration, United Nations, March 21,2014.
We will be there for all of you in the disability community, to celebrate how far we have come, to bear witness also to the ongoing trials throughout the world where societies are entrenched in the stereotypical falsehoods of generations past.
The Koirala family are pioneers in the truest sense of the word.
Little Pari has the ability to touch hearts; mom and dad, especially with their powerful communication skills, continue to touch minds. Education and correct information are key. Your experience and influence, with the touch of a button, travel across oceans and continents. A few can make a difference for many.
Richard Reilly
The Grandparent Connection
GiGi’s Playhouse NYC
Hi Richard,
Thank you so much for your comment!
We are so happy that Pari is doing very well. She will be going to Live TV show with Flower City Down Syndrome Network (Rochester, NY) to promote World Down Syndrome Day on March 17. Pari is such a wonderful child and we are very proud to be her parents.
Thanks!
Hari Koirala
https://www.facebook.com/suryodayadownsyndrome
We have our ÁNGEL to, he’s name is JESSE, he is 16 years old, he is in high school.
Your’s and our’s family, we are the same FAMILY.
you are rigth…. they was god’s unique gifh to us!!!!
Hello and Hugs to your sweet family!
We have worked with other families who have experienced similar stories in other parts of the world. Sharing your thoughts and triumphs is the best way to enlighten and encourage others. Thank you!!
Thank you so much GIGI PLAY HOUSE for publishing our story. Pari had her surgery on January which went very well.
Thanks to all, who read our story, support and follow her on her page: https://www.facebook.com/suryodayadownsyndrome.
Story never ends. We are keeping up our effort on raising awareness about DS in our community. Recently, I have posted a 10 minutes video in our own language explaining about how DS occurs!
Pari started walking very well at 14 months old.
Once again , Thank you very much!
Hari Koirala
https://www.facebook.com/suryodayadownsyndrome