“And
We have created some of you as a trial for others: will you have patience? And
your Lord is Ever-Watching.” (Quran 25:20)
*A
Life-Changing Diagnosis*
Imagine
receiving news that changes your life forever - news that challenges everything
you thought you knew about family, love, and acceptance. For my family, that
news came in the form of a tiny extra chromosome, one that would shape our
lives in ways we never could have imagined. My younger brother's diagnosis with
Down syndrome when he was just a few days old sent us on a journey of
discovery, growth, and ultimately, joy.
*A
New World of Possibilities*
Down
syndrome, a genetic disorder caused by the presence of an extra chromosome 21,
affects approximately one in every 700 births. It's characterized by
intellectual and physical disabilities, but it's also a condition that brings
unique joys and strengths. As a sibling of someone with Down syndrome, I've
experienced first-hand the ups and downs of this journey.
*Embracing
the Unknown*
When
my brother was diagnosed, It remember feeling a mix of emotions - shock,
confusion, and fear. My parents were devastated, and our whole family was
thrust into a whirlwind of doctor's appointments, therapies, and uncertainty.
We were suddenly part of a new world, one that we knew very little about.
*Finding
Hope and Empowerment*
In
the initial days and weeks that followed, we struggled to come to terms with
the diagnosis. We went through a range of emotions, from grief to acceptance,
and everything in between. But as we began to learn more about Down syndrome,
we started to feel more hopeful and empowered. We discovered that people with
Down syndrome are capable of leading fulfilling and meaningful lives, and that
they bring unique perspectives and talents to the world.
*Sharing
Our Story*
One
of the biggest decisions we made as a family was to share our story publicly.
We knew that there was still a lot of stigma and misunderstanding surrounding
Down syndrome, and we wanted to do our part in raising awareness and promoting
acceptance. So, we started sharing our story with friends, family, and even
social media. It wasn't always easy, but it was an important step in our
journey, and one that has brought us closer together as a family.
*The
Early Days*
Navigating
the first few years of my brother’s life was a challenging but rewarding
experience. We faced many doctor’s appointments, therapies, and uncertainty
about his future. But we also experienced the joy of watching him grow and
develop in his own unique way.
Although
Down syndrome has existed since the beginning of human life, it was hard to
find a proper institution for my brother to attend, grow, and learn alongside
others like him. While he was receiving physical therapy, one of the doctors
suggested a school specializing in teaching kids with special needs. My parents
immediately attended an orientation at the school, which offered a proper
schooling system catering to the needs of parents raising kids with special
needs. The environment was friendly, and there were many kids attending the
school. My parents decided to enrol my brother in the establishment.
*Journey
Of Hope*
*Breaking
Down Barriers*
As
my brother grew older, we faced new challenges and opportunities. We
encountered people who held misconceptions about Down syndrome, and we made it
our mission to educate them and break down barriers. There was another kid in
our block with the same disability, we saw with our own eyes how badly he was
being treated by his siblings and relative. It was heart ranching. We feel the
need to educate more and more people about this phenomena and how to deal with
it.
*Self-Advocacy
and Empowerment*
As
my brother entered adulthood, he began to self-advocate, making his own
decisions and choices. We supported him as he explored his interests and
passions, and we celebrated his achievements and successes. We realized that
individuals with Down syndrome are capable of leading fulfilling and meaningful
lives, and we wanted to help create a world where they are valued and
respected.
A
great example of self-advocacy and empowerment is Collette Divitto, a young
woman with Down syndrome who has become a successful entrepreneur and advocate.
She founded her own bakery, Collette’s Cookies, and has become a vocal advocate
for inclusion and acceptance. Collette’s story showcases the potential and
capabilities of individuals with Down syndrome, and serves as a reminder that
with the right support and resources, they can achieve their dreams and make
meaningful contributions to society.
There
are several individuals ranging from motivational speakers to athletes to
entrepreneurs with all kinds of disabilities who are finding their silver
lining each day to become examples for not just the down syndrome but people in
general.
“I
have learned to live with my disability, and it has taught me patience and
perseverance” – Wilma Rudolph (Olympic athlete with Polio)
*Celebrating
Differences*
As
we continued on this journey, we discovered the unique joys and strengths of
individuals with Down syndrome. We saw how they bring people together, foster
empathy and compassion, and teach us to appreciate the little things in life.
We realized that Down syndrome is not just a diagnosis, but a part of our
family’s story, and one that has brought us immense joy and fulfilment.
We
learned to embrace and celebrate our differences, rather than trying to hide or
change them. We saw how our brother’s unique perspective and talents brought
new ideas and creativity to our family. We began to see the world in a new
light, one that values diversity and inclusion.
“I
may have Down Syndrome, but Down Syndrome doesn’t have me” – Jamie Burke (Self
Advocate and Public Speaker)
*A
New Normal*
As
our brother grew and thrived, we realized that this journey had become our new
normal. We no longer saw Down syndrome as a limitation, but as a natural part
of not just our family’s fabric but a society as a whole. We had grown and
learned so much, and we knew that we would continue to face challenges and
opportunities with courage, love, and acceptance.
*Conclusion*
As
we reflect on our journey with Down syndrome, we are reminded of the immense
power of inclusion and acceptance. We have seen first-hand how embracing and
valuing individuals with extra chromosome can transform lives and communities.
There
is still so much room for education and growth on this topic. We must continue
to advocate for inclusion in every walk of life, from education to employment
to healthcare. We must work to break down barriers and build a society that
values and supports individuals with Down syndrome.
Everyone
has a role to play in building a more inclusive world. By supporting and
empowering individuals with Down syndrome, we can help them build lives of
purpose and fulfilment. We can create a world where everyone is valued and
respected, regardless of their abilities.
The Prophet Muhammad (peace be upon him) said:
“Allah has created nothing in vain. Every creature has a purpose, and every soul has a mission.” (Narrated by Abu Hurairah)
*Way Forward*
Let us continue to learn, grow, and advocate for inclusion. Let us build a world that is truly accepting and supportive of all individuals, including those with Down syndrome.
Now,
it’s your turn. Will you join us in creating a world where individuals with
Down syndrome are valued, respected, and empowered to reach their full
potential? Will you be an ally, an advocate, and a friend? Together, we can
break down barriers, challenge stereotypes, and build a society that is truly
inclusive and accepting of all. Let us rise up and create a world where every
individual with Down syndrome can live a life of purpose, joy, and fulfilment.
Let us show them that they are seen, heard, and loved. Let us be the change we
wish to see. Let us start now.
