Dr. Lalita Joshi, a retired Br .Gen. of Nepal Army Medical Corps
with strict principals, simple and honest is driven by a deep love for her son
Ashish, born some 22 years ago with Down Syndrome. She married
Dr. Prabhu Joshi, an anesthesiologist, in 1980 and their first son,
Amit, was born in 1981. Amit completed
his MBA in the US and is now working for an investment company in Nepal. In 1989 Lalita became an OB-GYN.
In 1991 their second son Ashish was born. For 14 days Ashish was in NICU before he was
able to come home. He possessed some
facial features of a child with Down Syndrome and although the family suspected
something, there were no real issues.
When Ashish was three the family went to
Madras for an elder
sister’s renal transplant. At that time Ashish was tested and it was
confirmed that he had Down Syndrome.
Fortunately for the Joshi’s, Ashish has been accepted by all family
members who refer to him as Lakshan Kobacha or lucky child.
The most common type of Down Syndrome[1] is
called Trisomy 21, which accounts for about 95% of people affected. Ashish has a less common type, known as
Mosaic, which is a milder form of Down Syndrome enabling him to function at a
much higher level.
In 1995 Lalita accompanied her husband while doing Cardio
–thoracic anesthesia training in Sydney, Australia . She also got a chance to
do training in Infertility in Paddington Royal Women Hospital where she met Dr
Stephen Horrowitz OB/GYN , her mentor. He too had a son with Down Syndrome. Dr Horrowitz provided Lalita with the latest
information on Down Syndrome along with a book written by a Pediatrician,
Prince of Wales Children Hospital, Sydney and VCD on early Intervention
developed by Macquaire University. All this helped her immensely to take care
and train her son bringing him to his present independent and confident
position.
When Ashish was five years old he attended The South Point
Boarding School in New Baneshor. The
school didn’t know that Ashish had Down Syndrome, as Lalita had kept this
hidden for fear of him not being accepted by others. At age 11 the school realized
that something wasn’t quite right with Ashish and that he had some learning
disabilities. Lalita spoke with the principle and told him the truth., that
Ashish had Down Syndrome. Instead of
rejecting him, the school decided to keep Ashish and take on this
“challenge”. The teachers, other parents
and children treated Ashish with a great deal of respect, often helping him
with his homework.
Ashish stayed at South Point until he was 18. He sat for his SLC but couldn’t clear
it. Ashish at 22 has a full life and
attends aerobics training twice/week, keyboard
(music) training 3x/week and basic computer training. He also attends painting classes. Lalita continues to look for avenues in which
Ashish’s real talents can come out. Ashish is getting home training from an
occupational therapist who comes to the home once/week which has helped him to
handle money and independently takes public transport.
Unlike in India where I spent three years working in the field of
development disability, In Nepal there are few services specifically focused on
people with Down Syndrome. Because of
this and the goal of wanting more for Ashish, in 2006 Lalita founded the Down Syndrome Association of Nepal (DSAN). Lalita says that “If every child matters, every
child has the right to a good start in life. If every child matters, every
child has the right to be included. And that is so important for children with
special needs." DSAN’s vision is a Nepal where children with Down Syndrome can grow up
to be independent, based on their capabilities, and be respected and productive
members of society.
In Nepal there are no official figures on the number of children/adults living with Down Syndrome. Lalita isn’t sure of the exact scope of her work but the goal of DSAN is to create awareness regarding Down Syndrome and opportunities for those living with DS. Lalita also provides pre-conception and pre-natal counseling to high risk couples who have the chance to give birth to a child with DS and also translates Down Syndrome documents into Nepali, of which there aren’t many. Lalita’s dream and major focus is to develop an early intervention centre which will provide therapies and trainings so that more people can have an early start in life helping them to become more independent and reach their own potential. Lalita is also concerned about providing services for a full “life-span approach” in order for people with Down Syndrome to lead a full life.
Drs. Lalita and Prabhu Joshi want to find a partner for Ashish and
hope that one day he will get married.
They would like Ashish to have a small business in order for him to earn
and be able to live on his own once they
are no more. In the end this is nothing
more than any parent would wish for their children.
Michael Rosenkrantz can be contacted at
mikerlakers@yahoo.com
What
is Down syndrome?[2]
·
Down syndrome is
a chromosomal condition that is typically caused when a baby is conceived with
47 chromosomes instead of the normal 46. Starting in the womb, this additional
genetic material alters the course of the child’s development.
·
The most common
form of Down syndrome, Trisomy 21, occurs when a child is born with a full
three copies of the 21st chromosome, rather than the normal two. In rare
cases, Down syndrome is caused by other chromosomal arrangements.
·
Children with
Down syndrome typically have intellectual disabilities, hypotonia (low muscle
tone) and characteristic facial features, such as upward slanted eyes and a
flattened nasal bridge.
·
Except for
Translocation Down syndrome, which occurs in about 4% of people with Down
syndrome, the condition is not inherited, which means that it doesn’t run in
families.
What
are the different types of Down syndrome?
There
are three different types of Down syndrome:
·
Down syndrome (or
Trisomy 21) accounts for
ninety-five percent of people with Down syndrome. A child with Trisomy 21 has
three copies of chromosome 21, rather than the normal pair.
·
Translocation
Down syndrome accounts
for just three to four percent of people with Down syndrome. Translocation is
what people are referring to if they say that the condition is inherited,
because usually one parent is a carrier. The extra #21 chromosome is present,
but attached to a different chromosome in the egg or sperm. The clinical
features of people with Translocation Down syndrome are indistinguishable from
those with Trisomy 21.
·
Mosaic Down
syndrome accounts for less
than one percent of all people with Down syndrome. Children born with Mosaic
Down syndrome have some cells with three copies of chromosome 21 and some cells
that have the usual pair. Clinically, babies born with Mosaic Down syndrome can
have the same features and health problems seen in babies born with Trisomy 21
or Translocation Down syndrome .However, the presence of cells with the normal
number of chromosomes may result in fewer characteristics of Down syndrome.
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