Heather Hildebrand’s motor neurons may be degenerating, but her spirit is unstoppable, moving people with her determination.
That’s probably why her story has gained national recognition as the featured profile on the ALS Association’s news release for the launch of the 2015 Walk to Defeat ALS season. She’s become the poster child for ALS in Pennsylvania, Steven Hildebrand, Heather’s husband, said.
Ruling out everything else
At 33 years old, Heather, of Manchester Township, is younger than the average person with ALS, Steven said. Fifty is about the average age, he said. She was diagnosed with ALS (amyotrophic lateral sclerosis), or Lou Gehrig’s Disease almost two years ago, right after she gave birth to her inspiration, the person that keeps her going every day, her daughter, Elsie.
Her diagnosis was shocking because Heather wasn’t bad off at all, Steven and Heather said.
“Especially just having her,” Steven gestured to Elsie. ” and wanted to see her grow up. It makes you speechless.”
The statistics can be shocking, Heather said, but the disease affects everyone differently. A lot of people live with ALS for many years, past the average 2 to 5, Steven said.
Heather said she is getting along with life. “It is what it is,” she said.
But she’s not without a strong support system. Her team name for fundraisers is “Derr,” from her brother who wasn’t able to pronounce her name when they were little. He would call her “Derr,” and it just stuck, even her friends at York Hospital still call her that. All of their friends and family are on board for fundraising and supporting Heather.
At York Hospital she worked in the microbiology lab, now she sometimes sees coworkers if she is getting care at the hospital. Her daughter also still attends daycare there.
“It’s weird being on the other side of it,” Heather said. “They’ve been really good ”
Living with ALS
Since the diagnosis, their lives have changed, including some parts of their house. The shower was an issue, so they remodeled the whole bathroom so it was easier for Heather to use. There are ramps outside and they bought a minivan with a ramp that allows for the heavy chair to be strapped in rather than having to transfer Heather out of it.
She goes to Hershey’s ALS clinic every three months, has an aide come to the house to help her get ready in the morning for two hours and their church delivers meals to them twice a week. They’re thankful for all of the help they can get, Steven said. He commutes to work in Baltimore every day.
While he’s at work, Heather spends most of her time in the living room, where Steven’s dad spends the day with her. She watches Netflix a lot, she said.
“I just have had time to catch up on all the shows I didn’t get to see when I was working,” Heather said. She’s watching House of Cards right now, but just finished Mad Men and likes Orange is the New Black.
The channel changes, though, when Elsie gets home from daycare. She watches Sesame Street and the Wiggles, Heather said.
“It’s never a dull moment,” she said, smiling as Elsie ran around the living room with their little white dog. The mother-daughter connection is strong, as Elsie makes a smooshed face at Heather from across the room, Heather does it right back and they both smile.
Last year she was a lot more agile, now she uses a power wheel chair, Steven said.
Her legs have stayed pretty much the same, Heather said, but her arms have gotten worse.
She went from having trouble using utensils to eat to even having trouble with finger food. Now, her daughter helps her bring the straw of her tumbler to her lips, getting distracted by the TV as she holds it.
Doctors say it can hit you hard for a long time and all of a sudden stop or plateau, or just come in waves, Steven said. They haven’t figured out what causes ALS. There are medications that can help the symptoms, but there is no cure for ALS, yet.
There is a genetic form of ALS, but the odds of it being passed down to Elsie are very slim, especially because Heather’s family has no history of the disease, Steven said. Familial ALS accounts for 5 to 10 percent of all cases in the U.S., according to the ALS Association’s website. Doctors advised the Hildebrands that they don’t need to get their daughter tested; it would add unnecessary worry, Steven said.
Heather feels bad that she can’t help with Elsie’s diaper, feeding or anything, Steven said. She’s frustrated with not being able to use her phone or computer; he has to show her what’s going on.
Last year, Heather was a lot better with a computer, she said, so she posted on Facebook a lot and told people to donate and sign up for the ALS walk. This year, she can’t do that, she said.
They had at least 150 people walk in Hershey last year and are hoping for a good turn-out again this year.
To raise money for things Heather needs they have a pot pie fundraiser, her brother does a big pig roast, and they sell bracelets and will probably do a sandwich sale too. Heather will be evaluated for an electronic eye gaze communication system in the near future, Steven said.
Steven had heard about ALS before Heather’s diagnosis, but not very much. It’s frustrating that not a lot is known about ALS, but Steven said there was also not a lot known about cancer at first.
“I never knew it would happen to anyone I know, or anyone I love,” he said. “There’s always hope that there’s a cure,” he said.
ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, according to an ALS Association news release. Eventually people lose the ability to initiate and control muscle movement.
Doctors diagnose ALS pretty much by just ruling everything else out, Steven said. Heather had been falling and it kept getting worse. They had thought it was because of her pregnancy, that she was just off balance, but eventually they reached the diagnosis of ALS.
If you go
Hershey Walk to Defeat ALS
Where: On the campus of Penn State Milton S. Hershey Medical Center
When: June 6
For more information, visit www.kintera.org/faf/home/default.asp?ievent=1125157
For more information about ALS, visit www.alsa.org