January Volunteer of the Month

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.