Two twin brothers with a rare disorder get both their dreams realized-a super cool playset and a trip to the happiest place on earth.
Luciano & Noah, age 3
Wiskott Aldrich syndrome
Luciano and his twin brother Noah were born in 2016 with significantly low platelet counts. They experienced multiple transfusions in the first few months for fear of either of the infants bleeding out, while doctors worked to determine the cause.
"For three months, we didn't know what it was," their mother Edna shared.
Eventually, Luciano and Noah were diagnosed with a rare genetic disorder identified as Wiskott Aldrich syndrome. They would both be in need of a bone marrow transplant, which they received in October 2017. Luciano and Noah would also have to face other challenges over the course of the next few years - ports, medications through IV, chemotherapy, and even temporary G-tubes for feeding.
"Luciano got very sick and we had to increase his IV steroids due to his illness," Edna reflected. "It weakened his muscles and he even stopped walking on his own."
While Luciano and Noah were in treatment at Hackensack University Medical Center, they were introduced to Make-A-Wish by one of their social workers. For Luciano, the wish of lifetime would come in the form of a playset in their family's backyard. And for Noah, a few months later, it would be a trip to the most magical place on earth, the Walt Disney World Resort.
"Luciano was having a harder time than Noah," Edna shared. "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 gave him the joy and imaginative freedom he otherwise could not experience, running around and playing outside with his twin brother.
"It was the first time in a long time I felt like I saw my two children being normal siblings again," Edna continued. "Noah also pushes Luciano a little. It helps him. Seeing them smile, play, have fun…and we have this for them to share forever."
A few months later, Noah's wish to go to Walt Disney World and other amusements parks in Florida would be granted, which would serve as a weeklong respite for not only Noah, but the entire family.
"Noah loves superheroes – especially the Incredible Hulk and Captain America," Edna reflected. "In fact, he and Luciano got to meet the Marvel characters on their third birthday when we were in Disney World!"
The trip to Florida was more than just a simple vacation – it was a chance for their entire family to get away from the treatments, the checkups, the medical protocols and the constant stress of schedules that had consumed them for the past three years.
"Every day, we had somewhere exciting to go, or something exciting to do," Edna continued. "Whether it was an amusement park, or the kids playing and running through water fountains with other children…just watching them have fun and be kids again was so special."
Luciano made great strides while on his brother's wish trip.
"Luciano had a hard time with water ever since his port was put in," Edna shared. "He was afraid to enter any type of water. But during our week at Give Kids The World, he went right into the pools with no problem! He seemed motivated to try new things."
Luciano and Noah both found a newfound energy since their wishes were granted. Noah continues to improve daily, with treatments becoming less frequent, now only every two weeks, and sights on the near future when he is treatment-free.
Luciano, who struggled with feeding and many other concerning effects of his condition, has recently advanced to eating on his own with certain soft foods – a milestone for the brave young three-year-old and a moment of pride for their entire family.
Make-A-Wish New Jersey, whose mission is to create life-changing wishes for children with critical illnesses, has a vision to reach every eligible child. If you are treating a child battling a critical illness that may be eligible for a wish, visit WISH.ORG/REFER to learn more about the eligibility and referral process.
A wish begins with a referral, and a referral begins with you.