Support Baby Kyros & his Family

Hi, my name is Tony and I'm fundraising on behalf of my nephew and godson, Kyros Bergida-DeLuca, and his family.

Kyros (kee-rohs) in Greek culture stands for “victorious,” which is fitting as family, physicians, and friends help him overcome unexpected, unclear, and overwhelming health challenges.

The NG tube you see in the photo keeps him nourished amidst a list of diagnoses: colitis, allergies, anemia, malabsorption, and oral aversion to name a few. The specialists are still unsure of the whole picture, saying it is a complicated, non-textbook case.

His parents—my sister Mary and her husband, Luciano—called him “the miracle baby” even before he was born. And while that’s a story for another time, these are the events and struggles of the past weeks and why they need your help.

On the night of April 22, my sister received the most terrifying call of her life.

She woke up to take care of Kyros and noticed a voicemail from an unknown number. She listened—it was from a doctor she’d never met telling her Kyros’ blood test, taken earlier that day, had returned with some concerning results. The doctor urged her to call him back immediately.

The family’s pediatrician had ordered blood work after Kyros’ body had swollen in the extremities. He’d been fussy and sleeping scantly the past weeks, but this seemed to coincide with teething and not to point to deeper issues.

With their hearts in their throats, Mary and Luciano called the doctor. It was after 11 PM. He told them Kyros’ lab results showed alarming depletions in his blood and that they needed to get him to the ER the next day.

The following day, Kyros was admitted to the Mary Bridge Children’s Hospital, after nearly 5 hours of invasive testing that left both parents and kiddo shaken.

While he had been struggling with a laundry list of allergies and gut issues for the past seven months, the initial diagnosis was still mind-boggling: malabsorption and malnutrition. Basically, his body was reacting as if it had been starved. This rare condition only occurs in about 2% of infants globally.

The first few days at the hospital were overwhelming.

Mary and Luciano kept playing over and over the events of the past months: Consulting multiple doctors, including a GI specialist, going above and beyond to eliminate any food that was a potential allergen from Kyros’ and Mary’s diet—so that breast milk would be completely hypoallergenic.

They thought of all the special teethers they had bought or made from scratch. The purees and smoothies they had offered multiple times a day for the past weeks. The nursing schedule. How could you do all this and your child’s body respond as if it were being starved?

Apparently, unknown allergens were still irritating his body to such a degree that any nutrients just leaked out of his digestive system. And as the body lost fat, it replaced it with water, masking the destruction.

Early morning conversations with the on-call GI and hospitalists found Mary and Luciano exhausted, in their pajamas, were filled with tears and many, many questions.

They were assured that their child could be saved, but that it would take time and the intervention of a feeding tube because Kyros refused to take orally the hypoallergenic formula.

Mary and Luciano held Kyros and watched as the nurses slipped the feeding tube down his nose and throat. I can only imagine what it was like for them seeing Kyros gag and his eyes roll back in pain as the tube was inserted.

The doctors also insisted he go off breast milk since his body seemed to still be reacting to it. Having to wean him overnight and watch him sob as Mary refused him his favorite source of comfort brought more tears.

However, amidst all the confusion and pain, they also experienced so much love from friends and family. Their pastor came to bless Kyros and pray with them twice. Cousins sent funny videos with get-well wishes. Friends sent comforting songs, brought meals, and gave long hugs at the hospital. Our mom also flew out to be there for physical and emotional support.

Kyros mostly just wanted to be snuggled in his parents’ arms and would begin to sob as soon as a nurse, doctor, or phlebotomist entered the room.

Blood draws were the most traumatic part of the day for all involved, as his veins were tricky to find and the IV lines often clotted after only one blood draw. But blood work was essential to find out if he body was being replenished.

At first, the needed nutrients sent him into “re-feeding” syndrome where his blood became even more out-of-whack as his body tried to process the needed nutrition.

Finally, after about ten days, the blood work showed that things were improving.

At thirteen days the dearly awaited news arrived that he was well enough to go home.

Mary and Luciano were trained multiple times on how to set up, check, and maintain the feeding tube. So with bagfuls of supplies and care instructions, they were discharged.

They told Kyros: “We are going home.” And the kiddo who had spent so many weeks in tears actually laughed and laughed with joy! He seemed to understand.

Massage techniques they had learned from the PT began to slowly flush the fluid out of his still swollen calves and feet. His irritated skin began to heal and he wanted to play again.

The biggest challenge continues to be nights—where formula and pump have to be set up and stored with six or seven ups and downs, not to mention diaper changes and calming Kyros from frequent nightmares.

Many nights he’s unable to sleep unless securely in one of his parent’s arms. Several mornings my brother-in-law would finally fall into bed at 9 AM and sleep for the first time while Mary and Grandma took over watching Kyros.

While the doctors hoped that Kyros would just ignore the tube, it irritates his face. Within a week the family was back at the emergency room on a busy Friday night—Kyros had managed to yank out his feeding tube. The family did not get home until after 11 PM with a 4-hour ER visit.

Keeping the tube in place is essential because it offers a bridge toward healing. As Hippocrates said, “Let food be thy medicine” and for Kyros, eleven and a half hours of the day are dedicated to healing through getting calories into his body.

In addition to the work of feeding, his days are filled with retaping the NG, catching up on developmental skills, visits with eight different providers, and trying to keep those curious fingers from yanking the tube.

Mary and Luciano are learning to accept that for at least the next few months Kyros’ care IS their full-time job.

His slobbery kisses and giggles show that he is feeling better, however, the road to healing will likely involve more trial, error, and patience to reach a final breakthrough.

While Mary and Luciano have both been able to resume work on a limited, part-time, and flexible basis, the income is far from covering their medical bills and basic living expenses. Additionally, Luciano had already been looking for a new full-time job before Kyros’s hospitalization.

As it becomes apparent healing will take time, they finally accepted that they needed more support. They allowed me to set up this GoFundMe so that both their medical bills and living expenses are covered until things get sorted out.

Would you consider joining me in financially supporting little Kyros and his parents to overcome these challenges?

Together, a community of gifts of any size can make all the difference for this family so that they can focus on working to get Kyros healed, without worrying about how medical costs and living expenses will be covered.

If giving monetarily at any amount is not possible at this time, your loving thoughts and prayers are greatly appreciated.

Our hope is that little Kyros will soon desire and learn to feed orally and be free of the tube. That his allergies will be resolved and his gut will completely heal. That all three family members—Kyros, Mary, and Luciano—will finally be able to experience full nights of sleep.

I thank you for your love for my godson and his family, in whatever form that might be. God bless.