The Siciliano family of Latham were told by their doctor they should be getting running shoes for yet-to-be-born baby Logan, but when he was born it turned out he might not ever be able to run.
Logan Siciliano was born in January with a skeletal defect called Marfan Syndrome. It was something the family knew he had a chance of having since his father, Mark Siciliano, was born with a mild case of Marfan. So when Stephanie Siciliano went in for her 20-week ultra sound, doctors thought they might have detected a problem with his heart. When they went in for a further diagnostic with a cardiologist, Logan didn’t seem to have a problem.
“The doctor said there was nothing wrong with the baby’s heart,” she said. “Then he said if anything we should buy the baby a pair of running shoes because he’s very active. Ironically, he won’t ever be able to run.”
In fact, Logan will have a problem for the rest of his life, Siciliano said. He will never be able to do anything strenuous. She added that he also has a mild case of scoliosis that could present itself at any point. That could mean he would have to get a back brace or may need spinal fusion.
Now, family and friends are putting together a benefit event for the family to help them pay for some of the hospital bills they have already amassed and will have to continue paying. There will be musical acts, magicians, clowns, a face painting booth and even a hula hoop station. Meal gift certificates, bottles of wine and quilts have been donated as gifts to be raffled off during the day.
Siciliano said the amount of support that has been coming in has been overwhelming and most of it is coming from unlikely places.
“People who have never met my husband, me or my son are giving to us,” Siciliano said. “It is very overwhelming. I guess the whole experience is very humbling.”
The family had been making frequent trips to Albany Medical Center for treatments for Logan. It was soon discovered that there were several valves in Logan’s heart that needed to be repaired, but doctors at Albany Medical Center said that it wasn’t something that has been done for infants.
After researching different hospitals that have done this type of surgery, the family soon found Dr. Del Nido at the Children’s Hospital in Boston. The doctor was able to repair three of the four valves, the aortic, the mito and the tricuspid valves, during a surgery on Sept. 1.
Siciliano spent a full 52 days in Boston with Logan before he was cleared to be brought back home. She said their time at the hospital made her miss some of the little things in life that she usually enjoyed at home. This will not be the only time he will have to have this surgery, though.
The situation has taken its toll on the family. Siciliano said that the family was once living off of two full-time jobs but is now only living off of a part-time salary. Mark Siciliano took a month off of work to be with Logan, but because he earns an hourly wage he didn’t take in any money.
“There are car payments and mortgages to be paid,” Siciliano said. “At some point we have to make a decision. But in the end, you’re not going to remember what you didn’t pay, you’re going to remember what you did with what you had.”
The hospital visits have gone down, Siciliano said, as now they are going just once a month for checkups instead of a minimum of once every two weeks. What is remarkable, though, is that Logan has appeared to be in good spirits throughout the process.
“He is amazing, I don’t even know how to explain it,” Siciliano said of her son. “He is a role model and by all means my hero.”
Most recently, the family learned that Logan had come down with a cold so they rushed him to the hospital immediately. He was soon isolated because a cold for Logan means that he had to be incubated. Now, he is home and being treated by a visiting nurse.
“Right now, we’re kind of on lockdown because he’s so immune compromised,” Siciliano said.
The benefit is set to take place on Sunday, Nov. 13, from noon to 6 p.m. It will be held at the Albany Elks Club at 25 South Allen St. with a requested donation of $20 for adults and $15 for kids 6-15 years old. Kids under 6 years old can get in for free.
