• Theresa Harmon’s two children both suffer from neonatal abstinence syndrome, or NAS, as a result of exposure to opioids in the womb.
• Harmon started her group, To the Moon and Back, to help other families like hers navigate NAS, which affects a growing number of young people.
• “The world needs to know them and their needs,” she says

Theresa Harmon considers herself a defender of the invisible.

In 2017, she started To the Moon and backan advocacy organization fighting for the growing group of children and young adults nationwide. who were exposed to opioids in the womb and who are now living with a multisystem disorder called neonatal abstinence syndromeor SIN.

NAS can present with a range of physical health, learning and behavioral problems such as developmental delays and hyperactivity.

Around 10,000 diagnoses were made between 2010 and 2017; the Centers for Disease Control and Prevention calculated that there is now a child born with NAS every 24 minutes.

Harmon, 45, says she drew inspiration from her own experiences to create her national support organization based in New England: She and her husband Andy adopted the first of their two children – both have SIN – more than ten years ago.

“The world needs to know them and their needs,” Harmon told PEOPLE, “so they can realize their true and full potential.”

Her eldest son has attention deficit hyperactivity disorder and high-functioning autism. He also suffers from a food eating disorder in which he has difficulty managing the temperature, appearance and smell of food and therefore has difficulty getting adequate nutrition.

Harmon says her children are “beautiful, smart and amazing. They have so many wonderful strengths, but also many difficulties brought on by their exposure in utero. I wanted them to have everything they needed to succeed. »

As his oldest son grew, his complicated behaviors intensified.

“He was having regular seizures and the people you usually turn to for support (school, pediatrician, daycare) weren’t able to help him,” Harmon says. She knew that if professionals, including herself, with her experience as a clinical social worker, didn’t know what to do, other families must be struggling too.

So seven years ago, she organized a support group for families of children exposed to opioids near her home in Plymouth, Massachusetts, and people came in droves, expressing the same concerns about their children .

“That’s how TTMAB was created,” she says, referring to her group. “We built on the unmet needs of our community and waited for the medical community to catch up. »

To the Moon and Back is a registered non-profit organization providing support to people across the country. More than 450 families participate on the organization’s public and private Facebook pages.

Harmon hosts online support groups for caregivers and playgroups and in-person meetups. Members also host an annual conference for providers and families where they can learn about new research and interventions.

The group has been instrumental in helping pass bills allocating funds for children born addicted to drugs and prioritizing legislation that improves direct resources such as early intervention.

Never miss a story: subscribe to PEOPLE’s free daily newsletter to stay up to date with the best of what PEOPLE has to offer, from celebrity news to compelling human interest stories.

The opioid epidemic, which began in earnest in the 1990s, has been complicated and punishing for many Americans – and its devastating toll in deaths and addictions is well-documented.

“Yet we don’t hear about the long-term effects of in utero opioid exposure on children. Money rarely goes to support them and yet many grow up with a myriad of struggles,” says Harmon. “These children deserve to be highlighted beyond the neonatal period.

She attributes her energy and determination to her own life and death challenges as a two-time childhood cancer survivor.

“I spent most of my life fighting to stay alive, first with childhood cancer and then with its long-term effects into adulthood,” she says.

She says she grew up as one of the first generations of survivors of bone marrow transplants and adult chemotherapy and radiation therapy given to a child: “People never knew what to expect from me, everything like children with NAS. I didn’t want them to have the ambiguity I had growing up.

Harmon praises the other parents in his group. “They are such warriors for their children. Many are very excited when they learn that we are fighting for them and wish they knew about us sooner because they feel isolated and like they are fighting alone. »

“Many share their stories of struggle, struggle and advocacy – because they do not feel supported by the medical and educational systems,” she adds.

Yet it’s the children that Harmon appreciates the most.

“My favorite part is when families discuss their child’s birth story with them, and when they attend our events, we hear that children immediately feel a sense of camaraderie and normalcy” , she said. “We know it helps them to know there are other kids like them. »