LOVELAND, Ohio — One mom is making sure her son, who has lived his entire life in isolation because of low immunity, is feeling love from people all over the world. And soon, because of his condition improving, taking him to each place people have sent words of encouragement.
What You Need To Know
- Luca Discepoli was born with Complete DiGeorge Syndrome
- Luca has no immune system and was born without a thymus, he had a thymus transplant at seven months old
- Now, after living his whole life in isolation, he is soon ready to be cleared to leave home rather than just for the hospital
- Luca's mom, Jessica, is asking people across the world to send in pictures of "Love for Luca" to show Luca all the new places he will soon be allowed to travel to
Raspy breathing is common for 18-month-old Luca Discepoli. Until his mom, Jessica, suctions out his trachea. But her commitment to making sure Luca is comfortable is what keeps her going.
“It’s kind of debilitating sometimes to hear these noises coming from him," Jessica said.
Luca was diagnosed with Complete DiGeorge Syndrome when he was born- a condition in which he was born without a thymus, meaning he had little to no immune system and t-cells. Luca was able to get a thymus transplant when he was seven months old, just the 109th patient to do so in the U.S.
“They are both transplanted into his thighs," Jessica said.
Because of his syndrome, Luca has lived his entire life in isolation between his home near Cincinnati and the hospital.
“Any infection or any illness could be critical for these kids," Jessica said. "Luca has been re-hospitalized just because we’ve had other things come up and it’s terrifying.”
But thanks to that transplant, Luca is getting closer to being able to go out into the world.
“It’s been so much and now we have so much to celebrate with his overall wellness and how he’s advancing and thriving," Jessica said. "I can’t wait.”
But Jessica wants to help Luca understand that an entire world of possibilities is out there which is why she started the Love for Luca campaign. She’s asking people to send pictures in places across the world with a Love for Luca sign. So far, Jessica has received dozens of pictures from across the world.
She plans to make a canvas of all the pictures put together. While she knows Luca doesn’t fully understand it now, she wants him to appreciate it as he gets older.
“He doesn’t know right now what’s going on. He will eventually,” she said. “When he’s older, I want him to realize that people were thinking about him, they cared about him and we wanted him to have the life that he deserved, that he’s kind of missed out on.”
If you would like to submit a picture for the Love for Luca campaign, you can email it to Jessica at jessica@lucarising.com or post them on the Facebook page dedicated to Luca's journey.