Raising Funds For A Suitable Van—

A Benefit Picnic For A Charming Little Boy

By Kaaren Valenta

Friends of the Hasselberger family of Sandy Hook are planning a fundraising picnic on June 13 to raise money for a handicapped-equipped van to transport 6-year-old Daniel, who is significantly disabled.

The son of John and Julie Hasselberger, Daniel was born with a condition known as polymicrogyria.

“Daniel has severe motor skills problems,” his mother said. “He cannot walk, talk, sit up, [or] eat on his own.”

He also has seizures, stomach and reflux problems, respiratory problems, and mental retardation, but he charms the world around him with his smiles and gentle manner.

“The part of his brain that controls vision was not affected, so he is very aware of the world around him,” Mrs Hasselberger said. “This little guy loves to ride in the school bus and swing on his swing — which he got from the Make-A-Wish Foundation — and [he] is the light of our live.”

“Daniel is an angel of all magnitude,” she said. “Gentle, kind eyes, laughs and smiles at everyone. He is handsome and so amazingly incredible.”

Daniel seemed completely normal when he was born.

“It was a normal birth, a normal delivery. He weighed 8 pounds, 10 ounces,” he father said.

Daniel and his family were featured in an article in The Bee in March 1998 after a bout of respiratory syncytial virus (RSV) brought him near the brink of death. RSV is a very common respiratory disorder that in rare cases can become life threatening. After 16 days in Danbury Hospital and the pediatric intensive care unit at the Westchester Medical Center, Daniel had a complete recovery.

“But as Daniel got older, about 6 months old, we noticed that he wasn’t developing the normal motor skills,” Mrs Hasselberger said. “We thought for a long time that the severity of the RSV caused the delays. But when he was a year old, he had an MRI at Yale, which clearly showed that his brain was malformed. It took us until he was 4 to get the right diagnosis, including a trip to Chicago to a specialist in ‘neuronal migration disorders.’

“Apparently I must have had a virus early in the pregnancy, the virus attacked the developing fetal brain, and about 90 percent of it is malformed,” she said. “Daniel’s RSV was an unfortunate illness, but it had nothing to do with his permanent disabilities.”

Daniel started to get therapy through the state’s Birth to Three program. When he was about 2 years old, the doctors noticed a failure to thrive, so a G-tube was inserted through which he is fed.

“He is never going to be able to eat normally, but he did eat a little pureed food orally until he started to develop stomach issues,” Mrs Hasselberger said. “Now, for the past 11 or 12 weeks, he has been rejecting food so he is being seen at Connecticut Children’s Hospital to find out why.”

Daniel was 4 years old when he suffered his first grand mal seizure. “They are sporadic, increasing, and uncontrollable,” his mother said. “They come out of the blue. He had one that wouldn’t stop so he had to be intubated.”

On January 13, Daniel had surgery on both hips and spent the next two months recovering.

“Hip problems are typical in children like Daniel who are in wheelchairs and have no weight-bearing exercise,” John Hasselberger said.

The Hassselbergers have two other children, Sarah Rose, who is 8, and Thomas, 3. Julie Hasselberger worked full-time in human resources until October 2002, when she lost her job because her company’s plant was closing.

“I started to work part-time out of the house as a financial planner with Prime America because it was clear when Daniel had his hip surgery and the seizures, that I need to be here,” she said. “Daniel attends classes out of the school district at Project Succeed, a program run by the Education Connection. But it is going to be renting space at the Reed School soon, and the school district also will be moving the Probe program from Middle Gate School to Reed.”

John Hasselberger works in quality assurance for Kerr, a company in Danbury that makes the blue lights that dentist use to cure fillings. His medical insurance plan allows $1,000 a year for durable medical equipment.

“He is growing and in about a year and a half he will need a new wheelchair,” Julie Hasselberger said. “A new one will cost over $10,000, but we will cross that bridge when we come to it.”

The specially designed wheelchair has to support Daniel’s head and body, since he cannot sit up by himself. “It weighs 100 pounds and we’ve been lifting it into our minivan since 1999,” his mother said.

To help raise money for a van with a lift, estimated to cost $40,000 to $50,000, friends of the Hasselbergs are organizing a picnic that will be held at Dickinson Park on Sunday, June 13, from noon to 6 pm.

The organizing committee includes Robert Karnoff and his wife Jennifer Sawyer-Karnoff, Carla Kron, Mark Toll, Meg Trubiano, Chuck Stofko, Kathleen Chrystie, Peter Bernson, John Hasselberger’s parents, Bill and Beverly Hasselberger of Danbury, and others.

“Carla Kron is handling the tickets. Karnoff, Bernson, and Tolla are the food committee,” Mrs Hasselberger said.

The picnic will include a barbecue buffet and beverages, pony rides, chair massages, blood pressure screenings, raffles, and events for the entire family. Tickets are $25 per person; children under 10 are free.

For more information or to order tickets call 426-8674, 426-9415, 746-2069, or 203-545-7886, or email liftupdaniel@snet.net. Anyone who cannot attend but would like to make a tax-deductible donation can send a check to the Newtown Fund, PO Box 641, Newtown CT 06470, indicating that the donation is to benefit Daniel Hasselberger.

“It’s not an easy thing to ask for help,” Julie Hasselberger said. “But it is not for us, it is for Daniel’s quality of life. He deserves it. He has enough going on in his life to have to deal with.”