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• WHITESTONE TIMES
April 9-April 15, 2021
Community GoFundMe campaign raises more
than $20K for Bayside toddler with rare disease
BY JENNA BAGCAL
Just days after a GoFundMe campaign
was launched for a Bayside toddler
diagnosed with a rare and fatal
disease, the community banded together
to show their support in the “fight
for Riaan.”
Earlier this month, Jo Kaur and her
husband Ritchie learned that their 15-
month-old son Riaan was diagnosed
with a neurodegenerative genetic disease
that gives children an average
lifespan of 3 to 5 years old. For privacy,
the family chose not to disclose the
name of the rare condition, which, according
to his aunt Minou Kaur, went
undetected during her sister’s pregnancy
genetic screenings.
“It is so rare that it was not part of
our pregnancy genetic screening — all
of those results were negative. It impacts
less than a few hundred children
in the United States,” Kaur told QNS.
She added that “at some point, his
progress will plateau, and then eventually
decline.”
A few weeks after Riaan’s diagnosis,
the Kaur family launched the Go-
FundMe with the title “Help Us Fight
For Riaan,” which quickly began circulating
on social media. At the time
of publication, 221 donors have raised
a total of $22,673 of the $25,000 goal.
Kaur said that the family is “incredibly
grateful for everyone’s support and
prayers.”
“This is a devastating experience,
and the strength, love and generosity of
our community is what keeps us going,”
Fifteen-month-old Riaan. Photo via GoFundMe campaign
she said. “No one wants to see a beautiful,
vibrant, innocent baby like Riaan
— or any baby — face such a severe diagnosis
and a dramatic shortening of
their life. It’s absolutely heartbreaking,
and even more upsetting that while we
have made many advances in medical
research, we still have a long way to go
in terms of achieving therapies for rare
genetic diseases, most of which have no
cure, including Riaan’s condition.”
Once the GoFundMe reaches its
goal, Kaur said that the first step is to
connect Riaan with top specialists that
will provide him the best care he needs
to manage his symptoms. In addition,
Kaur said that the family is working
with the city’s early intervention program
that will provide Riaan with critical
adaptive technology and therapies.
According to Kaur, Riaan’s parents
are in the early stages of understanding
the ins and outs of genetic disease
and have been working with scientists
and organizations to find what treatments
and therapies would be best in
the push for a cure, including drug
repurposing, ASOs and gene replacement
therapy. But they found that they
needed to move quickly due to Riaan’s
diagnosis.
In their research, the Kaurs learned
that the only viable solution may be
gene replacement therapy, meaning
that scientists would create a synthetic
gene to replace the mutated one in Riaan’s
body.
“However, when it comes to neurodegenerative
disease that impacts
multi-body systems and organs, there
are enormous challenges, including
figuring out how to cross the brainblood
barrier, safely deliver the synthetic
gene to all of the tissues necessary
and prevent an immune response
from the body. Recently, this type of
therapy has been proposed for Rett
Syndrome. The path to a cure is long,
challenging and maybe even improbable
in our lifetimes but for Riaan, we
must try,” Kaur said.
In the meantime, Kaur said that
despite being “globally developmentally
delayed,” Riaan “has continued
to make good progress.” The 15-monthold’s
family describes him as “a bright,
alert, inquisitive and delightful child”
who enjoys being read to.
As the family continues to raise
money, Kaur said that people can follow
Riaan’s story and progress at
#PrayForRiaan on Twitter.
Vol. 87 No. 15 28 total pages
2021
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