Julie Hasselberger’s fireplace mantel proudly displays big and small victories that her three children have accomplished in the form of trophies and certificates. One — a paper plate that reads “Best Smile” — stands out among the rest, as it was given to her oldest son, Daniel, in his special education class.

“He has the best smile,” Ms Hasselberger said, looking up at the memento. “He’s very, very happy and sweet. He can be goofy.”

Residents may remember reading about Daniel in The Newtown Bee nearly a decade ago in the article [naviga:u]“‘I Do It For Daniel’ — A Mother’s Crusade To Help Her Child.”[/naviga:u] It chronicled the ups and downs of life with a child diagnosed with polymicrogyria (PMG).

According to [naviga:u]pmgawareness.org[/naviga:u], PMG “is a condition characterized by abnormal development of the brain before birth.”

Doctors believe Daniel’s brain malformation was caused by the Cytomegalovirus (CMV virus) that Ms Hasselberger contracted while pregnant.

“The CMV virus is what attacked the brain’s development. PMG doesn’t get worse, but what does get worse are the secondary symptoms of age, illness, growth, [and] hormones,” Ms Hasselberger explained.

Throughout Daniel’s 21 years of life, he has experienced a great deal of respiratory issues, gross motor skill delays, and erratic seizures — including a sudden eruption two years ago on Thanksgiving Day right after dessert.

Daniel has also undergone a spinal fusion as the result of bone strength issues and scoliosis that developed during puberty.

“He’s pretty fragile in terms of illness,” Ms Hasselberger said. “If he gets sick, it can go downhill really fast, because he doesn’t clear his airway well and can’t aspirate. He’s got a big history of pneumonias and things like that.”

She added, “He doesn’t eat by mouth, because he doesn’t have the ability to safely swallow food. It just goes right into the airway, so he is fed with a g-tube [gastrostomy tube].”

Ms Hasselberger says those who are diagnosed with PMG display varied symptoms, with the only constant being that those with PMG are nonverbal.

“There’s different degrees of severity, and Daniel’s was pretty severe. Sometimes the kids are more functional and have mild disabilities,” she said.

Even though the majority of Daniel’s brain has been affected, his occipital area has remained intact, allowing him to be very visual.

To Ms Hasselberger’s knowledge, there is only one other child in Connecticut diagnosed with PMG.

With so few connections nearby, she decided to create an online community of support where people all over the world can share their experiences with PMG.

“In 2008, with the dawn of Facebook, I had nobody and didn’t know where to get information, so I started a [private] Facebook group called Polymicrogyria Support,” Ms Hasselberger said.

The group includes people as far as Ireland and currently consists of about 2,200 families — some of which are moms with newly diagnosed babies.

“I discovered very early that social media was a good way to fight the isolation,” Ms Hasselberger said.

After leaving work to focus on taking care of Daniel, the online group became a positive outlet for her to feel connected with people who could understand what she was going through.

It does, however, come with its fair share of loss.

As far as she knows, Daniel is one of the oldest people diagnosed with PMG, with the exception of a set of twins that are in their 30s.

“Just today, another baby in our group passed away,” Ms Hasselberger said. “It is hard to see that.”

For the last few years, Ms Hasselberger has also taken to actively posting monetized vlogs on [naviga:u]her YouTube channel[/naviga:u] to educate the public about PMG.

Today, she has nearly 7,700 subscribers and enjoys that the platform allows her to share information about her experiences as a mother and caretaker.

Graduation Milestone

While PMG has caused Daniel and his family to face many difficulties, it has not stopped Daniel from living an active life.

“Right now, his health has been pretty stable… He’s been doing good,” Ms Hasselberger said.

In addition to herself and her husband, John, caring for Daniel, the family also has weekly nursing assistance to ensure that there is always someone by his side to help him.

“He has nursing care every day from 7 am until 9 pm during the week,” Ms Hasselberger said. “He can’t do anything for himself.”

When Daniel was 3 years old, he began attending Project Succeed in Danbury for severely disabled children. The program later moved to Reed Intermediate School in Newtown and had a small group of children enrolled.

When the other children left the program, the Hasselbergers were informed that Daniel could not continue it as a private program for himself and that they would have to figure out where to place him next for his schooling.

“We decided to keep him in Newtown even though I didn’t love putting him in the high school, but [his brother] Thomas was there, and it was [Daniel’s] last three years, because he was 18,” Ms Hasselberger said. “It worked out okay. He loved the kids, and he had his therapy there.”

While at Newtown High School, Daniel especially enjoyed taking the Unified Theater class — a program that is open to students of all abilities — and participated in multiple productions.

“He loved that, he really did,” Ms Hasselberger said, reminiscing how he would light up on stage for the productions.

With the end of the 2019 school year, Daniel officially aged out of the public school system. To celebrate the milestone, his family organized a special graduation reception in the Newtown High School’s Lecture Hall on June 10.

“I did that because I had two [children] graduating at the same time, and I didn’t think Daniel would tolerate the O’Neill Center with 412 graduating seniors,” Ms Hasselberger explained.

So instead, Daniel wore his graduation gown and was awarded his diploma by Newtown High School Principal Dr Kimberly Longobucco while surrounded by family and friends at his reception.

Transportation Dilemma

Upon Daniel’s recent graduation, Ms Hasselberger has been working on self-managing his Developmental Disability Services (DDS) budget in order to create a system that can provide her son with vocational activities best suited for him.

Since some special needs community programs will not take Daniel due to his age or provide transportation for him, Ms Hasselberger says she would like to hire people to come to their home or have the option of having people take him places.

“But in order to take him out into the community regularly, we really need good, reliable transportation,” she said.

Their 2004 Ford E250 conversion van suitable for transporting Daniel and his wheelchair is facing continuous problems, including a fragile hydraulic lift. The van was purchased by the family roughly a decade ago thanks to a local fundraiser and The Scotty Fund.

With every trip, whether it be in town to the grocery store or to Daniel’s doctors at Yale, Ms Hasselberger says they worry if the van will break down.

“The van is 15 years old, and we would love more than anything to replace it with a more reliable minivan with a ramp, like a Toyota Sienna,” she said. “We need that security of knowing Daniel can go where he needs to go.”

With two car payments, her daughter Sarah attending law school in California, and her son Thomas heading to Berklee College of Music in the fall, Ms Hasselberger says the family is not in a position to finance a third vehicle.

Home Repairs

Not only is Daniel’s transportation causing problems with dependability, but repairs needing to be done at home are creating additional stress and financial strain.

After the family moved into their home in Sandy Hook in 2001, modifications had to be made to help with Daniel’s mobility.

Wheelchair ramps were installed outside doorways by Peter Brady of Handy Dandy Handyman, renovations were done to Daniel’s room, and a private bathroom for Daniel was outfitted with tracks on the ceiling to lift him to the shower.

“The whole bathroom is such a disaster,” Ms Hasselberger said solemnly. “They put the track lifts in to lift him from the bed into the bathroom, but it never works because he got big and the bathroom is small, so he would hit the wall, and it was causing problems.”

When they removed the tracks out of the bathroom, it left them with holes in the ceiling. To top it off, Ms Hasselberger says they have leaks in the bathroom, a shower that does not allow for Daniel to be rolled in easily, and doorways that are extremely narrow for having to navigate Daniel through them in his wheelchair.

With so many obstacles stacking up before her eyes and groups he was previously affiliated with no long able to aid him, Ms Hasselberger says she can not help but feel emotional.

“We’re starting to feel very abandoned, to be honest. It’s hard because there’s not really any support groups anymore…” Ms Hasselberger said. “People move on… we’re still here.”

She will never stop striving for the best life for Daniel, though.

“It is a true, wonderful, awesome miracle that Daniel is doing so well at age 21,” Ms Hasselberger said. “I just need the resources to be able to care for him.”

For those interested in helping support Daniel Hasselberger, e-mails can be sent to his mother, Julie Hasselberger, at [naviga:u]jhasselberger@snet.net[/naviga:u] and people can subscribe to [naviga:u]her YouTube channel[/naviga:u] under her name. Cards can be mailed to Julie Hasselberger, 35 Bennetts Bridge Road, Sandy Hook CT 06482.