18 | JULY 20 • 2023
OUR COMMUNITY
ON THE COVER
Nick remained in the hospital for
more than two months, fighting for
his life. Miraculously, Nick was able
to come home in October, but sadly,
with less vision and his hearing
beginning to fade. By February, Nick
could no longer see or hear and was
on a feeding tube. The decision was
made to once again give radiation a
shot in hope of Nick regaining some
hearing. It was unsuccessful. There
was simply nothing else to be done.
When Nick came home from the
hospital one final time, the doctors
told the family not to expect him
to make it more than a few minutes
after they pulled his breathing tube
out. Nick made it over 24 hours.
“Even in the very end, he was as
tough as they come, fighting for
more life,” Dan said.
After a lifelong, courageous battle
with NF1, Nick died peacefully at
home surrounded by family on May
6. He was 26 years old.
Earlier this year, when it
was getting more difficult to
communicate with Nick because
he could no longer hear or see,
everyone was feeling a little helpless
and desperate. In this moment, Nick
could sense that Jennifer and Dan
were upset and dictated the most
beautiful message to his caregiver
who then texted it to them: “I love
you guys. You’ve given me literally
everything. I don’t want you to think
that this is any of your faults. Love,
Nicolas.”
“So, in the middle of his suffering,
his empathy and caring for other
people showed as he was more
concerned with relieving any bad
emotions his mother and I may have
over the situation,” Dan recalled.
FIGHTING TO END NF
Jennifer and Dan Gilbert have
been passionate advocates in the
fight to end NF since Nick was first
diagnosed. They have been longtime
supporters of NF research initiatives
and established the Gilbert Family
Foundation in 2015 to further
advance NF research efforts.
In 2017, the Gilberts established
NF Forward, a nonprofit
organization sharing a vision with
the Gilbert Family Foundation
to eradicate NF by funding
groundbreaking, cutting-edge NF
research.
NF Forward’s signature event is
the beNeFit, a major gala held in
Downtown Detroit every November.
Since 2013, the event has raised over
$55 million for NF research and
attracted more than 1,700 supporters
annually to join the fight to end NF.
As a member of the Children’s
Tumor Foundation Junior Board,
Nick himself was the biggest
advocate in the fight to end NF. NF
Forward’s gala was Nick’s favorite
night of the year.
“It was a night he could count on
everybody to be around and support
something obviously so important
to him,” Jennifer said. “I think that
made him not just feel special, but
kind of seen.”
Nick loved his space in the NF
community and took great pride
in being an ambassador, even
developing relationships with many
other individuals who had the
disorder.
Once Nick got involved, he wasn’t
just showing up for meetings — he
was busy planning, reaching out to
his network and coming up with
great ideas for the cause.
The Gilbert family and its
foundation are committed to the
cause of wiping NF off the planet,
hopefully in the near future.
“
And we will do it in Nick’s name,”
Dan said.
continued from page 16
LEFT, TOP TO BOTTOM: A young Nick plays basketball while at Camp Tanuga
in Kalkaska, Michigan. Nick playing flag football in 2004.