Iceland review - 2014, Qupperneq 54

52 ICELAND REVIEW
heALthCAre
pioneering eFForts
the name ‘auður’ means wealth and riches, and since her
daughter’s accident, auður feels that her life has become “much
more useful.” over the years, she has certainly given a lot not
only as a mother but also as a pioneer in the field of spinal cord
injuries (Scis). in 25 years, she has not taken a holiday, strik-
ing a deal with her hospital employers that she would forego
holidays in exchange for being able to accompany her daughter
on medical visits and surgeries. this agreement has involved
numerous foreign trips to improve Hrafnhildur’s physical con-
dition and quality of life.
they have traveled to Sweden, Las Vegas and china, four
times to Russia, twice to France and twice to London. over
the years, auður has enlisted the support of former icelandic
president Vigdís Finnbogadóttir to persuade the then chinese
President Jiang Zemin to allow a chinese army doctor to travel
to iceland to operate on Hrafnhildur.
throughout her search for treatment for her daughter, auður
found that the development of treatment for those with Sci has
been slow to stagnant over the last 50 years. She views this lack
of progress as the result of competition and egos within medi-
cal circles, prejudice against those who do not speak english
as their mother tongue, and cultural discrimination. “People
always think that medical cures will come from the West,” she
says.
steady progress
Receiving replies from 200 letters she sent around the world,
including to nordic queens, celebrities and medical experts,
she gained the backing of the icelandic ministry of Health that
coordinated a meeting in 2000 to disseminate this collected
information at a gathering of the World Health organization
(WHo). in 2001, an international conference was then held
in iceland with 25 international experts in Sci treatment and
officials from WHo and the council of europe.
in 2006, a database was created of new and emerging Sci pro-
cedures. available in english, Spanish, arabic, Russian and chinese,
the database contains to date 400 pages on experimental treatment
of Sci. maintained by biologist dr. Laurance Johnson, who works
with paralyzed veterans in the U.S., it is used by between 304,000
persons a month from over 170 different countries.
in 2007, auður founded the institute of Spinal cord injury
(iSci), a charity for which Vigdís Finnbogadóttir is patron. the
charity’s mission is to be a leading advocate for advances in the
treatment of spinal cord injuries and to work toward cures of such
injuries through every possible means.
Founding a charity
auður says “25 years ago i was told that a cure for Sci was just
around the corner. i’m still being told that today. Yes, progress
has been made in wheelchair and urinary catheter technology, and
people are better trained in self-reliance, but i am not content
with that. there is nothing on offer for newly-injured patients.
Something is wrong in the medical field. it needs assistance from
the international community and reorganization.”
auður remains a powerhouse of industry. She supports
Hrafnhildur, who is now able to hear and speak, live in her own flat,
drive her own car, and is now taking computer lessons, rehabilita-
tion and physiotherapy sessions and even voice and singing lessons.
the administrative duties for the organization are relentless.
auður regularly attends meetings and conferences, and when the
business of the day is done, she sits down in front of her computer
around midnight and responds to and sends emails and letters.
She has continued to make steady progress for her cause. in
may 2014, a parliamentary resolution was passed, stating that
the icelandic government would follow up on Scis, support the
Un’s road safety initiative, and campaign for a United nations
development goal that would not only seek to find a cure to
neurological diseases and injuries but also develop a specific medi-
cal policy for Scis. in addition, the nordic council of ministers
pledged to focus on Sci in the coming years.
“Mothers are fighters ...
and a mother’s love is the
strongest love.”