By Nancy K. Crevier

Newtown residents who have lived here for more than a decade probably remember Daniel Hasselberger. Several years ago, a townwide fundraiser and donations from area organizations allowed his parents, Julie and John Hasselberger, to buy a specially equipped van for the medically fragile young boy. What costs of the $60,000 van were not covered by those donations were picked up by The Scotty Fund, a nonprofit organization that provides financial support to families with critically ill children.

"The outpouring of generosity then was amazing, and the van has meant so much to us," said Julie Hasselberger recently. But in recent years, donations to a fund set up for Daniel by The Newtown Fund, a nonprofit that provides emergency assistance to local families and serves as a repository for money collected on behalf of individuals, have dwindled as the family's expenses related to Daniel's care have climbed.

This summer, an extensive renovation to their home to provide Daniel, now 11 years old, with a private room and bathroom, and to make the home more easily accessible, has put the Hasselbergers in a precarious financial situation.

Daniel was born November 22, 1997, with a condition known as polymicrogyria (PMG), a brain malformation caused by the CMV virus contracted while Ms Hasselberger was pregnant.

"I didn't even know I was sick," said Ms Hasselberger, "and the first few months, we didn't realize there was anything wrong with Daniel. He was a quiet, good baby, but when he didn;t start doing the normal baby things — lifting his head, trying to sit — at a few months of age, we started to look into it."

At 11 months of age, Daniel had his first MRI and the family received the news that their baby boy had been born with PMG, an extremely rare disorder. The diagnosis, finally confirmed in 2001, has changed the family's life in ways they could never have imagined.

"It has been hard on our other children," said Ms Hasselberger. Her older daughter, Sarah, 13, and 8-year-old son, Thomas, have had to adjust to a lifestyle that revolves around the 24/7 care of Daniel.

"For a long time, until we had home nursing care provided two years ago, it meant that if Daniel couldn't go somewhere with us, we couldn't go," Ms Hasselberger said. The Ford E250 conversion van and receiving funds from Medicaid to cover the cost of daytime nurses have helped somewhat, but many daily adjustments must still be made depending on Daniel's condition.

"Sarah and Thomas have learned to be accepting of others with special needs, and Thomas, especially, shows a great amount of compassion toward others," she said. "But it's hard."

Her husband's focus, outside of work, is on spending time with Sarah and Thomas.

Daniel's PMG and microcephaly leave the boy with global motor skill dysfunction, seizures, respiratory and feeding problems, and orthopedic problems that have led to hip surgery, including one upcoming on September 29 at Yale New Haven Children's Hospital in New Haven. The Hasselbergers are hopeful that following recovery from this surgery, that Daniel will gain enough strength to be able to utilize the sit-to-rise walker and learn to walk.

He is nonverbal, communicating with his mother through a few cues that she and his nurses recognize, and is wheelchair bound.

Continuing To Thrive

Since his infancy, Daniel's life has been a series of trips to the emergency room, seizures that have put him on life support, surgeries, and endless tests. He has been fed exclusively via a feeding tube since he was 8 years old, due to degeneration of his ability to swallow.

Despite all of this, Daniel has continued to thrive, said his mother, including a growth spurt this past year that saw him gain eight pounds and grow eight inches.

"He is a gentle and happy boy," said Ms Hasselberger, "and really a joy to be around. At Project Succeed, at Reed Intermediate School, where he goes to school, he is a favorite with the fifth and sixth grade kids who come in to play with him there."

Every Monday, Wednesday, and Friday, LPN Marques Ramos accompanies Daniel to school on the bus, stays with him there, and brings him home again. Mr Ramos assists the family until 10 pm on those days, one of four nurses that provide respite for the family throughout the week.

Daniel also loves watching television, enjoys rhythmic music, and is part of the Parks and Recreation special needs basketball team, the Hoopsters.

"It's a great program," Ms Hasselberger said. "It gives Daniel the chance to interact with his peers."

Tactile projects appeal to Daniel, she said, as he is able to push, touch, and roll items, and he has recently started an aquatic therapy program called Angel Fish at the Quality Inn in Danbury.

"He loves it. Water is his thing," said his mother.

But all of the therapy, special equipment, and increasing needs related to Daniel's growing bigger come at a cost, much of which is not covered by Medicaid or private insurance. Miscellaneous medical bills, co-pays, and supplies run the family thousands of dollars each year. Four months of the aqua therapy, not covered by Medicaid or insurance, costs $1,600. A $1,400 positioning classroom chair would allow Daniel to spend more time with his brother and sister in the lower level family room. The family continues to pay off huge medical bills from Daniel's early years, as well, before they became eligible for Medicaid.

This summer's renovations came about in order to provide Daniel with the dignity and privacy an older child deserves, said his mother. Contractor John Gaynor of Gaynor Restorations in Sandy Hook redesigned the back entrance into the home, enlarged the downstairs bathroom to accommodate Daniel's wheelchair and special shower chair, and transformed an adjacent office into a bedroom.

Most importantly, said Ms Hasselberger, he installed a motorized ceiling lift system that allows Daniel's caretakers to hoist him into a sling that is carried directly into the shower, where he can easily be lowered into the bathing chair.

"He was getting too big for caretakers to lift easily, and with his seizures, it can be very difficult if his arms and legs start convulsing while he is carried," said Ms Hasselberger.

The motorized track system, by Patient Lifts of New England, can be operated by just one person. Special track was also installed in the family room to lift and carry Daniel from his wheelchair to other equipment or the couch. The motor that operates both tracks is portable.

The bedroom is fully equipped with monitors, and all of the medical equipment that Daniel might need, such as extra oxygen, suction, and a pulse oximeter.

"It is so wonderful to have it all at my fingertips now," said Ms Hasselberger. "Before the renovations, the equipment was all over the place."

Paying Back The Contractors

Bobby Mei of Brookfield Plumbing installed the plumbing at a generous discount, said Ms Hasselberger, and Garett Henchcliffe of Top Notch Landscaping created attractive ramps to the front and back doors that make moving Daniel in and out much easier. Even with the generosity of the contractors and foundations that included Save A Kid, the Fairfield County Home Builders Association, The Molly Tango Foundation, Caroline's Fund through Newtown Youth & Family Services, The Scotty Fund, donations from several private foundations and donations from individuals, cost overruns of nearly $8,000 that they do not have, have left the Hasselbergers with enormous bills, and still more upcoming costs for equipment to assist Daniel down the road. She estimates their needs through October of 2009 will total over $16,000.

"What I want more than anything right now, is to be able to pay back the contractors who have been so kind and generous," said Ms Hasselberger. "It is extremely hard to ask for help. This is a long way from when I was pulling in $90,000 a year in human resources, and we were both working," she said.

As the primary caregiver for her son, she has not worked full-time in ten years. A part-time position from home doing recruiting was ended this July, leaving Mr Hasselberger's job as a quality assurance engineer the sole source of income.

"Kids like Daniel are complicated," Ms Hasselberger said. "There is a cost associated with every single thing. It is amazing how all of the little things add up. It's hard to reach out and ask, but I have to do the best I can for Daniel. I'm very spiritual, and I believe that God has gotten us to where we are so far. My faith will help us get through this, too. So many people have already done so much for us, and we are so grateful to all of them. I do it for Daniel," she said.

To read more about Daniel, visit the family website at awesomedaniel.com. Donations may be sent directly to Julie and John Hasselberger, 35 Bennetts Bridge Road, Sandy Hook CT 06482, or a tax deductible donation may be made in his name to The Newtown Fund, c/o Daniel Hasselberger, PO Box 641, Newtown CT 06470.