Children from the Cook Islands Down Syndrome Association were thrilled to climb onboard the Takitumu volunteer service fire truck for a Christmas treat. PHOTO: Martha Nikoia. 20122207
Parents and families of children/adults with disabilities or genetic conditions have battled for some time for their loved ones to be included and accepted in society.
conversation between friends led to the registration of the country’s first
Down Syndrome Cook Islands Down Syndrome Association (CIDSA) in early December.
Tai Nicholas’ casual talk with Margaret Numanga, who has a young grandchild
with the genetic disorder/condition, sparked the drive to call out to similar
families and form the organisation.
something Numanga feels very passionate about.
what we’ve gone through, I thought of how other families are coping. Now we are
set up, we are trying to rein support and profile the families to see what
their priorities are,” she says.
turnout of 30 parents attended the initial meeting to formalise the group that
is partnered with the New Zealand Downs Syndrome Association.
says: “We want to raise awareness and create an inclusive community so our kids
can be involved in everything like sports and the community events.”
include their needs and maybe send a team to the special Olympics, other
Pacific nations have teams that attend these games, to get help with speech
therapy and mobility and look at funding to train and obtain online speech
therapists and have a forum where the families can come together,” he says.
want to know how many children we have in the Cook Islands with Down Syndrome.”
Nikoia and John Dando’s 12-year-old son Dryden was diagnosed at nine months.
our experience with Dryden, it’s great to have a point of call for advocating
for our children and finding services and resources, medically and
educationally for our children. This is a wonderful wonderful Christmas gift
for our kids,” Nikoia says.
excited, there’s a lot of ground work to be done, it’s the beginning of
something useful for our kids.”
family of three moved back to live last year, and the couple had a vision for
such a group to cater for families such as theirs.
that is close to our heart,” says Nikoia.
was a few months old when the young couple moved to Australis where he was
lucky there (Australia), we were young and we had family there to help us,” she
equipped with the services provided in Australia, the couple knew the Cook
Islands did not have the qualified expertise for persons with Down Syndrome,
but were confident enough to return home.
moving home everything is falling into place, there is lots to do and we want
for families to not have to leave home.”
will attend the Inclusive Education Unit (IEU) at Nukutere College when school
and Henry Nootai’s 13-year-old son Elijah also has Down Syndrome and is a
student at the college.
seen the struggles firsthand with speech language therapy and physical therapy
and welcomes the formalisation of the CIDSA.
“It’s a great initiative, because I was trying
to find ways in which to include my son in other organisations like Autism,”
Nootais returned to live on Rarotonga in 2018. That year Elijah attended St
Joseph’s Primary School then moved onto Nukutere College last year.
moved back, he was embraced by the community in Arorangi, by the church,
school, he’s a very social kid.
wants to fit in, to be treated like a normal kid…”
Elijah Nootai in action in the Nukutere College cultural dance group 2019. PHOTO: Tokerau Jim. 20123101
has noticed the increase of children attending the IEU.
there were 17 kids enrolled, she says.
passionate about the inclusive for all and now more than ever, holding people
experience she noted was during the island’s Covid-19 colour coded awareness
contacted the hospital to ask if Elijah’s medical diagnosis was noted in their
system, she was assured it was.
they don’t, and the worse thing was when the Puna centres were formed during
Covid, they stated there was only one person with a disability in the community
of Ruaau… and it wasn’t my son,” she says.
data capture is quite tragic, not portraying the true numbers.”
is confident that the true numbers will surface and funding and assistance for
the kids will become achievable with CIDSA.
always bumping heads with people, that’s what we do, so with this (CIDSA) - it
can be out there in the forefront.”
wants is for the powers that be, “to just include our children.”
Islands Games were not inclusive, she says.
children couldn’t participate…”
would like to thank Tai Nicholas and Margaret Numanga for getting everyone else
on board and is looking forward to a better year for their children.
CIDSA celebrated with a Christmas party at the Punanga Nui Market in
mid-December and a meet and greet with Santa.
Takitumu Volunteer Fire Brigade also attended the special day with the kids
excited to climb onboard the fire truck.
who have children or a member of their family with Downs Syndrome are
encouraged to come forward and register their children.
syndrome is a condition in which a person has an extra chromosome. Chromosomes
are small ‘packages’ of genes in the body that determine how a baby’s body
forms during pregnancy and how the baby’s body functions as it grows in the
womb and after birth.
a baby is born with 46 chromosomes, all people with Down syndrome have an
extra, critical portion of chromosome 21 present in all or some of their cells.
additional genetic material alters the course of development and causes the
characteristics associated with Down syndrome.