If you’ve ever been to one of the Brigance Brigade Foundation’s signature events, you may have met the Hildebrand family – Heather (PALS), her husband Steven (CALS), and their daughter, Elsie (6).
In their living room, Heather and Steven’s engagement photo is proudly displayed. In the photo, Heather is wearing a Pittsburgh Steelers Jersey and Steven is wearing a Baltimore Ravens jersey. Although they root for rival teams, they’ve formed a strong family unit.
Heather and Steven met through an online dating site and married in 2010. When asked about the experience of online dating, Heather joked “you have to go through a lot of losers to find someone.” Steven replied more seriously, “You go through a lot of people until you find the right person, and I think that I was put into Heather’s life for the right reasons.”
As newlyweds, Heather and Steven both underwent gastric bypass surgery and shortly after, Heather became pregnant with Elsie. During this period, Heather began having trouble with her balance. Her doctors attributed her challenged with her balance to her changing body, first from her weight loss and then her pregnancy. Like so many others, Heather’s earliest symptoms of ALS were thought to be caused by something else. As her symptoms progressed, Heather underwent a myriad of tests before she was ultimately diagnosed with ALS shortly before Thanksgiving in 2013.
The news of Heather’s ALS diagnosis was devastating to the Hildebrands. They were new parents and had not imagined a life plan that included ALS. No one does. Heather recalls her favorite piece of advice, which altered her outlook on her ALS diagnosis and has become her mantra, “When I was first diagnosed, my medical team told that I wasn’t dying from ALS, I’m living with it. That’s how I’ve tried to live my life ever since.”
Some people may feel uncomfortable with the idea of having strangers in their home, helping with intimate tasks; in contract, the Hildebrands have taken this opportunity to welcome Heather’s nursing aids into their family circle. Elsie admires the nurses who assist her mom. At only six years old, Elsie dreams of becoming a nurse when she grows up because, as Elsie proudly declared, “I like to help people. I’m good at helping my mom.”
In 2019, Heather received a Brigance Brigade Foundation PALS Grant for a tablet not covered by her insurance. This tablet allows her to use eye gaze technology to have a fulfilling job selling children’s books online, joke with her husband, encourage her daughter, develop friendships, and speak to state legislators to advocate for people living with ALS.
Every gift matters! $700 – that was all it took to purchase the tablet that enables Heather to continue to make memories with her daughter and husband.