8 THE QUEENS COURIER • APRIL 8, 2021 FOR BREAKING NEWS VISIT WWW.QNS.COM
GoFundMe campaign earns more than
$20K for Bayside toddler with rare disease
BY JENNA BAGCAL
jbagcal@qns.com
@jenna_bagcal
Just days aft er 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 “fi ght for Riaan.”
Earlier this month, Jo Kaur and her husband
Ritchie learned that their 15-monthold
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 aft er Riaan’s diagnosis,
the Kaur family launched the GoFundMe
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.”
“Th is is a devastating experience, and the
strength, love and generosity of our community
is what keeps us going,” 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 fi rst 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.
“We are trying to connect with as many
researchers and scientists that we can fi nd,
as well as other parents or families who
have gone through similar experiences to
think about the best path forward,” said
Kaur. “Th e ultimate goal is to fi nd a treatment
to delay disease progression, and of
course to fi nd a cure. We are very aware
that the clock is ticking, and that drug creation
can move at a glacial pace. We are
also trying to balance all of this work with
being there for Riaan and maximize his
quality of life. We want Riaan to enjoy his
life and have as many wonderful and joyful
experiences as possible.”
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 fi nd 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 multibody
systems and organs, there are enormous
challenges, including fi guring out
how to cross the brain-blood 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. Th e 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.”
Th e 15-month-old’s family describes
him as “a bright, alert, inquisitive and
delightful child” who enjoys being read to.
Photo via GoFundMe campaign
“His laughter and smiles can melt even
the coldest of hearts. He’s one of those
kids who knows just how adorable and
beautiful he is, and how to use that to
his advantage. Th e wisdom in his eyes is
striking. He absolutely loves Elmo and
Sesame Street songs, and it makes us really
sad that hearing loss is a part of his
diagnosis,” she said.
As the family continues to raise money,
Kaur said that people can follow Riaan’s
story and progress at #PrayForRiaan on
Twitter.
“If we all work together, and push, and
help fund these eff orts, we can create miracles,”
Kaur said. “Th ere are stories out
there where research has been able to provide
the treatment or cure a family has
desperately needed. We are committed to
that being Riaan’s story, and have faith in
him and in scientists. We also ask people
with genetic research or relevant experience
to feel free to reach out to us if they
wish to help aid our eff orts.”
15-month-old Riaan.
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