Kathy Smith, the mother of two boys with Sanfilippo syndrome, says she is ex­hausted, but grateful for the outpouring of generosity toward her family.

VERONICA YANKOWSKI staff Kathy Smith was moved by the outpouring of support she received from the community after the News Transcript published a story about her sons Sean (l), 7, and Robert, 8, who both have Sanfilippo syndrome.

More than 300 people attended a bene­fit held on Sept. 28 at Leggett’s Sand Bar, Manasquan, the beach town where Kathy grew up. John Paglia, the owner of the tavern, donated the space, along with food, drinks and music. Each participant spent $30 for a buffet and two drinks, knowing that the money would go to a fund set up in the names of Smith’s sons, Sean and Robert.

A story about Smith’s boys was pub­lished in the Sept. 24 issue of the News Transcript. The family lives in Freehold Township.

The Sept. 28 fund-raiser was held as a means of raising money to buy a van es­pecially equipped to accommodate the boys and to provide funds to install a ramp on the family’s house.

As it turns out, that was only the beginning of how the community has responded to the Smiths’ story.

A Freehold couple, Mr. and Mrs. Christopher Ives, donated a van and the owners of Red Bank Volvo are go­ing to do the conversion, which includes taking out the middle bench to make room for the boys’ wheelchairs and putting in an automatic lift.

"I went down and saw the van. It’s a Ford Windstar," Smith said.

In addition, the owners of a company in Wall Township, Inch by Inch, has agreed to construct the ramp at the Smiths’ home and Home Depot in Freehold Township is donating all of the materials, she said.

Smith said that in addition to the money collected at the fund-raiser, she received $10,000 from the American Children’s Society in Marlboro.

"I got almost another $10,000 through the mail in checks from $5 up to $5,000. People are amazing. Almost every day there are messages on my answering ma­chine from people wanting to help. The first day [after the News Transcript story was published] I got home from work and there were 56 messages on my answering machine," Smith said.

The boys, Robert, 8, and Sean, 7, both have Sanfilippo syndrome, a genetic en­zyme deficiency that causes eventu­al regression to a vegetative state. The life expectancy of a person with Sanfilippo syndrome is 10 to 15 years.

Robert is in a wheelchair now, and Sean, who is still mobile, is a handful be­cause he is so hyperactive.

"Sean’s as hyper as ever, but he’s do­ing good. Robert had a good week," Smith said recently. "Sometimes he has a good week and laughs all week and sometimes he just cries.

"I go on day by day. I’m trying so hard to change the system. I want to see Social Security provide more supplementary in­surance for children. When Robert was 2 we needed help but we were told we made too much money for them to help us with $25 a week," Smith said.

At that time she did not have a clue as to what kind of help was around and no­body had told her about the state Division of Developmental Disability (DDD) pro­gram.

"They are wonderful, but the funds aren’t there; just like all of the other ser­vices that have been cut back on. I did get help through them a couple of years ago to put a fence around the property in the back yard so that the children would be safe," she added. "They also have other programs like one that provides baby-sit­ting money. We get $240 a month baby-sitting money. Somebody has to be there to take care of them if I need to go out or need help in the house."

Smith said she has one woman who comes in to help four or five days a week.

"She is certified in child care and nurs­ing home care. She’s absolutely wonder­ful. It does help, but it doesn’t even cover the cost of one week," she said.

Smith works part-time at Pro Vo Vo, Freehold, when the boys are in school. Her husband, Robert, works as a laborer at Fitzpatrick and Associates in Tinton Falls.

She noted that DDD eligibility is not income-based.

The Division of Developmental Disabilities can be reached by calling 1-800-832-9173.

Another source of help for families of children with serious illness or medical conditions is the Catastrophic Illness in Children Relief Fund Commission. Established by legislation in 1988, the state fund is unique in the nation because families of any income level may qualify. It defines catastrophic in economic, rather than medical terms. The family in­formation number is 1-800-335-fund.

Smith said she contacted the commis­sion and was told that the money in her children’s relief fund has to be used be­fore the program can provide assistance.

"There are many things people need to know about obtaining funds, but I’m amazed that so many people don’t even know about what’s out there to help them," Smith said.

BY LINDA DeNICOLA

Staff Writer

Story touched hearts

of people who reached

out to local family

Helping hands offer aid to parents, boys