A story to remember

In the News • MARK ROSMAN

One of the most difficult tasks this job presents is writing articles about children who are battling serious diseases, or about young people who lose their life in a tragedy.

The articles that describe the challenges these individuals and their families are facing tug at the heartstrings. The people we write about pass through our lives for a week or two when the news is fresh, but then we lose track of them over the years as other news comes and goes.

An obituary that came across the fax machine in our newsroom on the afternoon of Nov. 11 reminded me of one of the most touching stories this newspaper has ever covered.

The obituary from the Freeman Funeral Home reported the death that day of Robert John Smith, 13, of Freehold Township, after a battle with Sanfilippo syndrome. I immediately recognized Robert’s name and the disease he had battled since he was a child.

A quick search of our online archives brought me back to Sept. 24, 2003, when we published a story about Robert and his brother, Sean.

Sean, who is now 12, also has Sanfilippo syndrome, a rare disease that has no known cure.

The syndrome is a genetic enzyme deficiency whereby sufferers eventually regress to a vegetative state. The predicted life expectancy for a person with the disease is 10 to 15 years. Sadly, that statistic was true for Robert.

Meanwhile, Sean continues his own battle with Sanfilippo syndrome.

The September 2003 article reported that a fundraiser was going to be held to help the boys’ parents, Kathy and Robert, come up with the money they needed to make renovations to their home so that young Robert would be able to get in and out of the wheelchair he had been recently forced to use by the escalating course of his disease.

The Smiths also needed a specially equipped van to transport the boys as they became increasingly debilitated.

The outpouring of community support that article produced was nothing short of amazing.

More than 300 people attended a benefit at Leggett’s Sand Bar, Manasquan, the beach town where Kathy grew up.

A Freehold couple, Mr. and Mrs. Christopher Ives, donated a van, and the owners of Red Bank Volvo did a conversion that included taking out the middle bench to make room for the boys’ wheelchairs and an automatic lift.

Home Depot in Freehold Township donated the materials for a ramp that was constructed at the Smiths’ home so that the boys’ wheelchairs could more easily reach the school bus.

A donation of $10,000 was received from the American Children’s Society in Marlboro. Another $10,000 in donations arrived through the mail in checks ranging from $5 up to $5,000.

Kathy Smith later said that on the day after the first article about her boys was published, she got home from work and found 56 messages on her answering machine from people offering to help the family.

Who could ever forget a story like that?

I was deeply saddened to learn of young Robert’s passing last week and even more upset to learn that Kathy’s husband, Robert, 46, had died suddenly and unexpectedly in July. To lose a son just months after losing a husband is almost too much for one person to bear.

Kathy Smith’s family story touched a lot of people five years ago. Her story touched me again last week.

Mark Rosman is the managing editor of the News Transcript.