Thank You Steve Hildebrand!
Steve Hildebrand had so much to look forward to in 2012. He
had a good job, a very happy marriage, and a baby on the way. Life was full of
hope and great expectations.
He did not expect to have to deal with the realities of ALS.
While Steve’s wife Heather started to have physical problems
during her pregnancy. That seemed normal at first. After all, it is very common
to have health issues while pregnant. However, her stumbling and falling seemed
less normal and the problems progressed. Heather was familiar with various
health issues through her education and work in a Microbiology Lab, but nothing
that was happening with her body made sense.
Until then, Heather probably connected falling to her
husband Steve. In addition to falling in love after meeting online, Steve had a
more serious fall at his bachelor party two weeks before their wedding in 2010.
She still laughs about it now, but she was definitely not happy to see him in
crutches at their wedding.
Even with the physical complications she was dealing with
during her pregnancy, Heather gave birth to a beautiful baby girl on December
26, 2012. Elsie was their Christmas gift that year and every year since.
However, Heather’s problems persisted. In fact, they only
got worse. She had more falls over the coming months. Her friends and coworkers
noticed that she had a foot drop. Doctors tested for many things, but
everything came back negative. On November 3, 2013, before Elsie was even one
year old, Heather was diagnosed with ALS.
It was crushing news to Heather and Steve. Just one year
before, they had so much to look forward to in their lives, so much love to
share, and so much to joke about between them. After they met with Dr. Simmons
at Hershey Medical Center and started to get involved with the groups and care
team, they regrouped together as a family. Steve looked around and everything
in his life. ALS may have changed their circumstances, but it wouldn’t change
him, it wouldn’t change the love he had for Heather, and it wouldn’t change
that feeling he had that there was still so much to look forward to and enjoy.
In early 2014, Heather and Steve joined the Hershey Walk to
Defeat ALS and created Team Derr, which was a play on a name that Heather’s
brother used to call her when they were young. They were one of the top teams
that year, bringing in many friends and family on the sunny June day as Elsie
rode with Heather along the walk path.
That walk, and each one after, was both joyful and hard for
Steve. He appreciated seeing everyone come to their side and rally for the ALS
cause, but seeing your wife and the mother of your child battle ALS is never
easy. She was the star of the day and he wanted that for her. For years, she
had been the star of his life.
Being a dad is hard. Being a husband can be hard too. Being
an ALS caregiver can be very difficult. Steve was dealing with all of it, but
every day, he still had something to look forward to when he came home from
work. Heather is still Heather. Elsie grows every day. Since those first
stressful months, Elsie has grown up and is no longer their little baby. She’s
an active six-year-old child, doing all of the things that a young girl wants
to do, including being spoiled with gifts at Christmas and birthday. The best
part of those days for Steve is sharing his love and pride for Elsie with
Heather. It is the thing he was looking forward to even as he himself stumbled
to their wedding day with his broken leg.
Over the years, Steve has brought his story not just to the
Walk to Defeat ALS, but to lawmakers as well. He visits the Pennsylvania
capital in Harrisburg every year with Heather to share his mix of challenges
and hopes so that legislators will empathize with his story and act. It’s a
role he never expected to play, but Steve and Heather are incredibly effective
at getting legislators to listen and support increased funding year after year.
Steve and Heather have also brought their story to
Washington, DC, making the journey to meet with members of Congress and to meet
with ALS families from across the country. It’s rewarding for them and gives
them a bonding experience with others who understand what they are facing.
Steve knows that they are not alone. It makes a difficult situation just a bit
easier.
Politics isn’t the only place where Steve has used his
powerful story to make a difference. He has been in many local media stories,
both in print and on TV, to help raise awareness of ALS so that people will
raise money and so that other ALS families know that there is hope and help
available to them. Steve never misses an opportunity to make ALS a focus.
While ALS can be a very difficult burden, Steve and Heather
still like to joke and have fun together. Heather is a Steelers fan and Steve
is a big fan of the Baltimore Ravens and they used that as a competition where
the person who raised less money for the Walk to Defeat ALS would have to wear
the opposing team’s jersey. Steve was never happier to see Heather lose at
something then when she had to wear Ravens colors at the walk. Today, they both
have reasons to like the Ravens thanks to the wonderful support of the Brigance
Brigade and former Ravens star OJ Brigance, who is also living with ALS. In
2018, Steve and Heather attended an event with OJ Brigance, which helped them
bring even more attention to ALS locally.
Through it all, Steve Hildebrand has been an incredible
volunteer for The ALS Association and the ALS cause in general. He has used his
story as an ALS caregiver to raise thousands of dollars, bring increased
awareness for the disease, and create better public policy. He does this by
being honest and true to his family and his own reality. Most importantly,
Steve does it all because he knows that he has a lot to look forward to and he
is going to make sure that all ALS families can look forward to better lives
too.
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