on the day of her second birthday we
literally drove to Columbia to get her
screened for the Ionis Nusinersen trial
then 3 weeks later she got her first
injection and we started noticing
changes in her around the 2-month mark
she crawled all the way from the living
room to our master bedroom and we were
just in shock she now stands we have
little Orthotics that help her now with
a walker and we just started her with
crutches not only that the disease has
stopped progression she's no longer lost
anything in fact every time she goes in
for another injection she gets a little
stronger as soon as we found out that
the drug trial that we were interested
in was actually discovered here at Cold
Spring Harbor Labs we had to come down
Cold Spring Harbor Labs we had to come down
for me Dr. Krainer is a superhero in
regular clothing once you get inside and
you see what goes on here this is
groundbreaking stuff this is affecting
everyone across the world without basic
research there would be no hope for my
child so we're very hopeful for the
future for the first time