“The Dempster philosophy is that we’ll help you do what you want to do, but we’re not going to run it for you,” Jennings said. “That’s fine. I can ask people to get involved.”

Breedlove Sells, at Jennings’s invitation, attended a meeting at Brandeis focused on 22q support. For Jennings, it was part of a goal of helping other parents surmount the obstacles she often did by herself for Monica.

“In my experience, when families can communicate with each other, it makes all the difference,” she said. “Even some really rare conditions are much better known. There’s still a lot of people who don’t understand what 22q is. Michelle has listened to what families are saying and is responding to what we needed.”

Monica was in the hospital for six months with breathing problems after she was born and required a trachea tube until she was 14. Over time, developmental issues cropped up.

“It becomes even murkier then,” Jennings said.

But Jennings’s persistence has paid off. Monica is a postgraduate student at Weymouth High who loves to write and is doing occupational therapy. She passed the MCAS tests and wants to go to college.

“She’s doing amazingly well,” Jennings said. “She has a lot of special needs but functions at a pretty high level. She’s a great kid.”

This summer, more than ever, Red Sox games will mean a lot to their family.

“We want to see Ryan pitch,” Jennings said. “Nobody will be cheering more than we will be.”

Bettsy Leech is a genetic counselor and case manager of the 22q clinic at Cincinnati Children’s Hospital Medical Center. She is blunt in stating that the syndrome is unlikely to ever be cured.

“We can’t fix sickle cell anemia, which is caused by one single DNA letter change in one gene,” she said. “We have kids [with 22q] who are missing genes. Gene therapy is probably not going to happen.”

The alternative is assisting families with the many challenges they will face. There are children with 22q who die shortly after birth and others who grow up to earn master’s degrees. Early detection and treatment makes the difference.

“Somebody could throw their money into trying to find a cure,” said Leech. “But along came the Dempster Foundation and they focused on support and networking. Before the Dempsters and their outreach, nobody was connected.

“Doctors can tell you the bad things. What they have done is give families hope and let them know the positive things about their kids. They’re all about support, and that kind of good news travels fast.”

Leech doesn’t know Dempster but has worked closely with Breedlove Sells. The Dempster Family Foundation is helping fund a family conference this summer at a hotel in Blue Ash, Ohio, that will connect parents and help train them.

“I hate to say this, but somebody famous having a child with 22q was awesome,” said Leech. “It’s so reassuring for mere mortals to know that it can happen to rich and famous people. It doesn’t make you feel picked out or punished. The national recognition has been incredible.”

Leech said that cases of 22q sometimes go undiagnosed for years. In the 5-10 percent of the cases that are hereditary, she has met parents who didn’t realize they passed it down to a child.

After a diagnosis is made, the patient’s quality of life improves almost immediately. Calcium deficiencies can be addressed along with anxiety issues and thyroid issues. One adult patient told Leech she was relieved to learn she had 22q because that explained her learning disability.

“People who have to work twice as hard to do some things that their brothers and sisters are doing think there’s something wrong with them,” Leech said. “If we can get more general practitioners familiar with this, it means they can do preventative care.”

By talking about 22q and raising awareness, Dempster has helped change how hospitals operate.

“He gave us hope,” Leech said. “It’s not a PR stunt.