2 Freehold boys with
Sanfilippo syndrome
Brothers battle disease
as parents rally support
Fund-raiser to aid
2 Freehold boys with
Sanfilippo syndrome
BY LINDA DeNICOLA
Staff Writer
Brothers Robert, 8, (r) and Sean Smith, 7, of Freehold Township still enjoy life even though they are both chronically ill. For story, see page 9.
FREEHOLD TOWNSHIP — Some-times life can be so incredibly cruel and unfair that one does not have to go far to see proof. In this case only as far as Park Avenue where Kathy Smith, and her husband, Robert, live with their two sons who are dying of a rare disease with no known cure.
Robert, 8, and Sean, 7, both have Sanfilippo syndrome, a genetic enzyme deficiency whereby sufferers eventually regress to a vegetative state. These beautiful, brown-haired boys have a predicted life span of 10 to 15 years.
Their parents work hard to maintain a normal and happy life for them and to get for them the things they need to meet that goal. Right now the Smiths need renovations on their house so that Robert will be able to get in and out of the wheelchair that he was recently forced to use by the escalating course of his disease. They also need a specially equipped van to transport the boys as they become increasingly debilitated.
But the couple, who both work, cannot afford the renovations or the van. Robert works as a laborer at Fitzpatrick and Associates in Tinton Falls and Kathy works part-time at Pro Vo Vo when the boys are in school. They also need money for additional medical expenses that are not covered by health insurance — items like disposable diapers, which the boys will always wear, are particularly needed.
Smith said she sent an appeal to companies that make Pampers and Huggies diapers and was told that donations are not made to private individuals, only to organizations.
As a result of the myriad needs of these children, a fund-raiser will be held on Sept. 28 from 3-7 p.m. at Leggett’s Sand Bar, a tavern on First Avenue in Manasquan, the beach town where Kathy grew up. For $30, guests will get a buffet and two drinks and know that the money will go to a really good cause.
John Paglia, the owner of the tavern, is donating the space, along with food, drinks and music. He did it last year, too. Smith said about 500 people showed up for the fund-raiser. She’s hoping at least that many show up this year.
In addition, donated items will be auctioned off. Right now those items include a weekend getaway with lift tickets in the Poconos, a two-night stay in Cape May, and another in Lambertville. There are tickets for a number of events such as a Christmas show in New York, Pebble Creek golf, Bogan Basin Blue fishing trip, Stress Factory Comedy Club, and more than 25 gift certificates to restaurants and hair salons, among other auction items.
There is also signed sports memorabilia from a number of teams, including the New York Giants, the New York Jets and the New Jersey Devils.
Smith said, "I can go on and on about the support I have received. I do believe there is a reason why I have these two beautiful kids, but I don’t know what the answer is. I just know that I try to live in the moment and enjoy what I have right now. With all the bad, I have found that people are generally good and have been generous."
According to Smith, it didn’t start out bad. She and her husband had no idea their beautiful baby boy had a debilitating disease, nor did they know that she and her husband both carried the gene for Sanfilippo syndrome. The illness is so rare that it wasn’t diagnosed until Robert was 4, even though he was diagnosed as being hearing impaired when he was just over 2.
At just over 3, he was diagnosed with a learning disability.
"The deaf school brought me in and said there is something more going on here. So we took Robert for additional testing. That’s when we found out. By then we already had Sean. He was not showing signs of the disease at that time, but we had him tested and found that he also had the syndrome," Smith said.
Both boys go to a school for multi-handicapped children. In addition to needing a wheelchair, Robert has no speech left and Sean is so hyperactive that he needs one-on-one teaching.
"Sean is doing very well, but Robert’s disease is progressing, They are doing the best they can to keep his muscle tone," Smith said, adding, "It’s hard to deal with, but it’s all I know."
Smith’s sense of humor was alive and well though. She said she calls hyperactive Sean "Ricochet Rabbit" after the cartoon character who bounced from one spot to another.
Both boys have been diagnosed with Type A of the disease, which has the shortest life expectancy, Smith said.
Robert and Sean look very much alike, but Robert, who is one year older than his brother, is a little bigger. Smith explained that they both have the coarse hair and eyebrows that are characteristic of children with the disease which affects one in 24,000 children worldwide.
Smith knows life can be incredibly unfair, but it can also be incredibly surprising. She knows this because of the outpouring of love and concern she has received from the community.
"I have obtained my nephews’ stem cells and hope for a break, but the United States, Germany and Australia are still doing research with mice," she said.
Donations can be made to the Robert and Sean Smith Fund, EIN 113648311, 720 Park Avenue, Freehold 07728.