Jenny Mosier’s day-to-day life includes a lot of sadness. Inner battles that wage war on her ability to get out of bed in the morning and put a smile on her face.
It’s been nearly two years since she lost her six-year-old son, Michael, to Diffuse Intrinsic Pontine Glioma (DIPG), which means it’s been nearly two years since their last touch and their last memory made.
“I can’t explain it except to say it’s like I have this parallel track, going on in my head all the time, that is solely consisting of the time when Michael was with us,” she said.
“Because that’s all we have for him, there is a foot of mine that’s always going to be in the past.”
Jenny and her husband, Mark, also have Lila, who will turn five in early March. For now, the memories made with her are relevant to Michael since he also lived life as a five-year old, turning six in September of 2014, one week after being diagnosed with DIPG. As Lila grows up, though, she will surpass Michael’s age.
“Right now it’s not that weird because Lila is a young child,” said Jenny. “So we can still make comparisons between them — ‘oh, Michael loved that,’ or that kind of thing. It’s all very naturally fitting in with what we’re doing as a family.
“But I have a lot of fear about what it’s going to be like as she gets older and his memories only go up to six years old. I don’t have something to say about what Michael did in college. That’s going to be very tough.”
Deriving Fuel For and From A Foundation
Sometimes Jenny wishes she could hide away in her bedroom and never come out. She wishes she could wallow and relax and let her grief flow.
While she allows herself to have bad days, she is also channeling her grief as the executive director of the Michael Mosier Defeat DIPG Foundation.
The foundation’s mission is to raise awareness and funds for DIPG research, making it one of the family-fueled foundations fighting for a viable treatment plan and cure for DIPG.
“There are all of these (DIPG) families who are so dedicated to making a difference and pouring their hearts and souls into it,” says Jenny.
“Those are the very families who have had to endure the loss of their child, which is just an incredible emotional burden that will always be carried.
“Sometimes it feels like the least that other people can do, who fortunately are not in this situation, is to dig deep and find ways to help us.”
Many of those individuals have stepped forward for the Mosier family. They’ve raised research dollars through a number of events, including a Dress Down for DIPG for local law firms, the Defeat DIPG Superhero Sprint & 6K, and many other third-party events.
“Sometimes I’ll feel frustrated or a little weary about the whole thing,” said Jenny. “Then there are things like this big Giving Tuesday initiative we did this year.
“We ended up raising over a hundred thousand dollars on Giving Tuesday. Days like that really re-invigorate our efforts. It feels like, ‘Okay, we’re doing something here.’”
What Keeps Families Going
Something to understand about these families who create and nurture foundations like the Michael Mosier Defeat DIPG Foundation is that it is done out of a feeling of obligation to the families who will come later.
Yes, foundations keep these families busy (sometimes in a good way, sometimes in an exhausting way) and keep their child’s memory alive, but the No. 1 reason they’re created is to make sure no other family has to feel the devastation these DIPG families have experienced.
“It’s important for people to have an education about the deadliest pediatric cancer,” said Jenny. “Brain tumors are now the leading cause of disease death for kids, surpassing Leukemia. That’s a pretty remarkable thing.
“And in brain tumors, DIPG accounts for the most significant number of fatalities. It’s important in terms of the devastation that it is causing to so many families, with hundreds of kids who are dying each year. There’s a value in the public as a whole understanding the nature of this beast.
“It’s an often used comparison, but I think it really does drive the point home: if you had someone with a shotgun going out and shooting and killing hundreds of kids every year in the US alone, that would be a big story all the time. DIPG is doing that to our kids, and people need to know about it.”
Why Awareness Matters
The Michael Mosier Defeat DIPG Foundation experienced significant growth in 2016, adding two chapters, the Avery Huffman Defeat DIPG Foundation and Connor Man Defeat DIPG Foundation. They are also working to establish a DIPG Awareness Day in every state.
“We did our first race at the end of May and we’re really thrilled with the success of that event, which brought together lots of people in our community but also a couple dozen childhood cancer families, both in this area and elsewhere,” said Jenny.
“For me, that was the most meaningful part of the whole event: to be there standing with a bunch of people who really cared and were really passionate about helping this cause.”
It’s those individuals who are keeping the family going as they create happy memories with their daughter, Lila, but experience a huge hole in their hearts and family that will never go away.
“People don’t always realize how much an email or a note or a willingness just to engage on social media, and share something you’re trying to do, or just showing up for events and things like that, how much all of that means,” said Jenny.
“Just on an emotional level for families who are trying so hard. It really means the world.”
What You Can Do
When it comes to DIPG, there are so many things you can do to make a difference. Remember, every cure started somewhere!
- Vote for Coach Beilein in the Infiniti Coaches Charity Challenge to win $100,000 for DIPG research. All winnings are going directly to Michigan Medicine’s accelerated pediatric brain tumor initiative.
- Share this and other stories about DIPG to raise awareness around the need for research and funding. Dollars flow toward the loudest voices.
- Donate to The ChadTough Foundation, which is focused 100-percent toward DIPG and pediatric brain tumor research.
- Become a ChadTough Champion or a volunteer!
As always, thank you for being ChadTough!