To know Beth Serafin, you have to know her daughter Heather Serafin.
With help from her brother, Roy, Heather Serafin is the reason The H Life was created. The nonprofit organization helps families who have been affected by Diffuse Intrinsic Pontine Glioma (DIPG), a terminal brain cancer.
Heather Serafin was diagnosed with DIPG on October 25, 2013 at the age of 15. DIPG typically affects children 6-11 years old and cannot be removed with surgery. The doctor advised her family that she had three to nine months to live.
“Heather was a fighter, so we decided to do a clinical study with radiation,” Beth Serafin said. “Heather had almost two years of an all-healthy life. It was a tremendous blessing.”
Heather appeared to be a healthy teenager. She knew something was wrong when she ran during a fundraiser and realized she could no longer swallow. She then began having vision problems and seeing double.
“It was a very traumatic thing,” Beth said. “Heather had determination. She had strength and vision. She was also very sweet.”
Because of Heather’s health issues, she left school but was determined to graduate early.
“Regardless of whether they gave her nine months, she was still going to do it,” Serafin said. “She ended up taking all of her classes in eight weeks, and we had teachers that refused to do the home study because she was going to die. She ended up doing summer school during what could have been her last year of life, but we were blessed, and she had more.”
Beth said she fought with everything she had while Heather was fighting her life. Heather Serafin died on October 25, 2015. Now, sharing Heather’s story is Beth’s passion.
“No matter what it takes, I’m going to do it. It’s still hard, but to me, it’s so important,” Beth said. “She may not have realized what she was doing, but she gave me a purpose. I don’t know if I would be as functional as I am if I didn’t have the purpose.”
Beth Serafin’s purpose includes helping people understand that building their child’s faith is one of life’s most important lessons.
“We don’t know what is coming, so it’s important to build faith, build hope, build strength, and help the kids understand courage,” Serafin said. “It’s become such an incredible passion, and it’s what I want to do. As a mom, it feels like when I am telling her story that she will never be forgotten. In that, I’m trying my best to never have another mom go through what I’m going through.”
In the mom groups that Serafin is a part of, she said that the moms often share that they do not want other moms and families to go through what they have, so they fundraise and advocate for research.
“When she passed, a lot of me went with her,” Serafin said. “I decided that I could not be angry at the God who could rescue her. I know that I know where she is. That’s why my message is built on building faith. Our children are worth fighting for.”
As the family researched DIPG and looked for support groups, Heather Serafin and her dad, Brian Serafin, found a website for DIPG. Heather would talk about faith and hope as part of the group. Beth Serafin said the people in charge of the website advised Heather that any hope she was sharing was a false hope. Heather and her dad were no longer allowed to comment on the website.
“She always had hope for tomorrow,” Beth Serafin said. “She and her brother decided they would make a charitable brand called ‘The H Life’ because you weren’t allowed to talk about hope.”
The siblings designed shirts, and Heather attended an event in Portage. Six weeks later, Heather passed away.
“About 18 months later, we were approved to become a nonprofit rather than a charitable brand,” Serafin said. “We are three years old as of May 10.”
Beth Serafin continued to attend events, and T-shirts were sold as a fundraiser. She soon realized that the organization could be selling consumables along with wearables, but Beth Serafin was not sure where to start. The answer came through prayers and someone who would produce a line of coffee for The H Life to sell. The organization later added tea as a fundraiser.
“When a child is diagnosed, we send them a shirt that says, ‘Cancer does not define me.’ We also send a note or letter that says that they are worth fighting for,” Serafin said. “We also have people who send cards with stickers, letters of encouragement, and little gifts.”
Serafin said the children are encouraged to tell their stories because those stories and what that child cares about are important to everyone.
“They are leaving memorials behind for their families and friends,” she said.
The organization also remembers the children who have died. Beth Serafin said many times people do not know how to comfort families that have lost a child.
“They were afraid to say Heather’s name,” Serafin said.
Because of this, Serafin came up with the idea of what she calls a one-pot wonder. The one-pot wonder is a pot of coffee made from two ounces of coffee grounds. The coffee grounds package tells the story of a child who has passed from DIPG.
“It gives the parent an opportunity to say, ‘It’s okay to say their name. It’s really important that you do so I know that you did not forget.’ That has been very helpful,” she said.
Serafin said the money that’s raised helps families and is given to research. The fundraisers also provide the public a chance to be advocates and spread awareness. Serafin also attends events where she can share her daughter’s story.
New products will have the children’s uplifting words that children such as her daughter’s, which was “God is not finished with me yet.” Others will say, “Fear is a liar.”
“These kids are absolutely amazing as are the things that they come up with, Serafin said.
A Facebook page was created to talk about The H Life and its mission. The page uplifts families who have been affected by DIPG. The page also informs supporters about upcoming fundraisers and brings about awareness. To purchase coffee and other products, visit The H Life’s website.