WEST ORANGE, NJ — Twins Luciano and Noah, now age 3, were born in 2016 with significantly low platelet counts. While doctors raced to determine the cause, the first few months of life for these West Orange brothers saw them endure multiple transfusions to fight the likelihood of either of the infants bleeding out.
“For three months, we didn’t know what it was,” their mother, Edna, said.
Luciano and Noah were eventually diagnosed with a rare genetic disorder known as Wiskott-Aldrich syndrome. The diagnosis led the family down a scary, unknown path, with both children receiving bone marrow transplants and facing additional health challenges, including daily medications, chemotherapy and G-tubes for feeding.
“Luciano got very sick, and we had to increase his IV steroids due to his illness,” Edna said. “It weakened his muscles to a point where he could no longer walk on his own.”
While the brothers were in treatment at Hackensack University Medical Center, one of their social workers introduced the family to Make-A-Wish New Jersey, an organization with the mission to fulfill life-changing wishes for children with critical illnesses.
Last year, both brothers’ individual wishes were granted. For Luciano, the wish of lifetime was a playset in the family’s backyard. For Noah, it was a trip to the most magical place on earth: Disney World.
Running around and playing outside with his twin brother, Luciano’s playset immediately gave him the joy and imaginative freedom he otherwise could not experience.
“Luciano was having a harder time than Noah,” Edna said. “He was immune-compromised, and so he could not visit public playgrounds for fear of germs from other kids. It was really difficult.”
Luciano’s playset brought immediate hope, strength and joy to their entire family.
“It was the first time in a long time I felt like I saw my two children being normal siblings again,” Edna said. “Noah also encourages Luciano. He helps him. Seeing them smile, play, have fun … and we have this for them to share forever.”
A few months after the family received the playset, Noah’s wish to go to Disney World in Florida was granted, providing a weeklong respite for the entire family.
The trip to Florida was more than just a simple vacation — it was a chance for the family to get away from the treatments, the checkups, the medical protocols and the constant stress that had consumed them for the past three years.
“Every day on our trip, we had somewhere exciting to go, or something exciting to do,” Edna said. “Just watching them have fun and be kids again was so special.”
Luciano made great strides while on his brother’s wish trip, too. Edna credited Luciano’s growing courage to the memories created on their trip to Disney World.
“Luciano had a hard time with water ever since his port was put in,” Edna said. “He was afraid to enter any type of water. But during our trip, he went right into the pools with no problem! He seemed motivated to try new things.”
Almost a year since the playset was delivered, Luciano and Noah continue to find a sense of energy and joy as they explore it together. The playset has become even more significant now, during the COVID-19 pandemic. With both boys battling immune deficiencies, the family must remain extra vigilant and remain at home as often as possible for fear of contracting any type of illness.
“We try not to go out other than to the clinic, which is now monthly,” Edna said. “It has always been hard for us with other viruses, and now it’s even harder.”
“It’s scary,” she continued, reflecting on their daily routines. “We don’t know who or what’s been infected: the mail, the food from the supermarket. There is no vaccine, and Luciano is unable to get vaccines. My mother works at a supermarket, and when she comes home, the boys want to go downstairs to see her, but they can’t.”
With all this uncertainty, the playset in the backyard continues to be a beacon of joy for the twins and provides a sense of normalcy and safety amid this abnormal spring and summer.
“Watching them enjoy the playset together is incredible,” Edna said. “They love the tunnel! And Luciano is doing great. He’s crawling now, he is much stronger, climbing on his own, going down the slide. He has lost much of his sense of fear. He’s trying new things — he sees Noah doing more and more, and he wants to follow him. He’s eating more on his own, too!
“We cannot take our kids out and expose them to new things,” Edna continued, “but what Make-A-Wish says is true. Wishes are life-changing! This playset has been life-changing!”
West Orange twins get dreams granted by Make-A-Wish added by Editor on
View all posts by Editor →