As son fights childhood leukemia, Bluffton mom doesn’t want pity. She wants action
When Bluffton mom Karina Manfru tells other people that her son has leukemia, she usually gets the same response: People feel sad or sorry for her family.
“It is hard, super hard, and you won’t know the extent of how hard unless you experience it,” Manfru said. “I was so ignorant of how nasty this disease is.”
But there are a couple of ways healthy people can help the tens of thousands of people diagnosed with leukemia each year, Manfru said. These actions are helping to save the lives of people like her son, 8-year-old Julian Porto, who is currently receiving treatment at the Medical University of South Carolina for acute myeloid leukemia.
“The No. 1 thing [most] anyone can do is donate blood,” Manfru said. “Every chance you get, please do it. I can’t remember how many transfusions he has gotten and it literally keeps the kids fighting.”
She also urged people to join the bone marrow registry, which can be done through bethematch.org. Joining the registry allows blood cancer patients to find matches who can donate life-saving bone marrow.
“There is one person that matched Julian 100%,” Mantra said. “He [or] she … has had to go through extensive medical studies [and] surgery and inconvenienced him [or] herself to give a total stranger the gift of life. We will always be thankful and hope one day we can meet this person.”
All about Julian
Julian was diagnosed with acute myeloid leukemia on Oct. 20, 2020. Since then, Manfru said, he has been hospitalized at MUSC’s Shawn Jenkins Children’s Hospital for more than 120 days in four different visits and given only a few days’ break to be home in between. He has received three rounds of chemotherapy, several blood and platelets transfusions, and a bevy of other medical procedures.
The transplant has taken a toll on the energetic kid, his mom said, with fevers reaching as high as 105°, and nutrition coming through a stomach tube, Manfru said.
“Mentally, he tries his best to remain positive, but it is hard for an 8-year-old to not be able to be free, play with friends,” Manfru said. “He loves sports and playing outside, and since October he just has not been able to do any of that. He sometimes asks ‘Why me?’ and that breaks my heart.”
On Feb. 19, Julian underwent a four-hour-long bone marrow transplant, which gives him a 70% chance for long-term survival. According to the American Cancer Society, it can take anywhere from two to six weeks for the new cells to “engraft,” or grow and make healthy blood cells. During that time, Julian must remain hospitalized with round-the-clock monitoring, as the procedure can pose serious risks.
For two to three months after Julian is released, the Porto family will need to stay within 20 minutes from the children’s hospital, as he will have semiweekly clinic appointments and monthly bone marrow biopsies.
A GoFundMe account has been set up to help them pay for rent and living expenses in Charleston.
“We have not been able to be together longer than [four] days at a time since this started, ... but unfortunately it is not something we can afford,” Manfru said.
During Julian’s treatment, his mother has accompanied him at the hospital while his older siblings — Julieta, 13, and Joaquin, 10 — have stayed at home with their father, Mateo Porto. Due to COVID-19 restrictions, Julieta and Joaquin are not allowed to visit their brother at the hospital.
“This diagnosis affects the entire family, and it is a lifetime thing,” Manfru said.
Julian likely will have to do redo second grade, she said.
“There isn’t any possible way he can catch up on all missed school,” she said. “And we are OK with that. Priority No. 1 is get him healthy, mentally and physically.”
At Julian’s request, the family has started a drive to collect Legos to donate to pediatric cancer patients at MUSC Shawn Jenkins Children’s Hospital in Charleston. They have created a Facebook page for the effort.
Manfru said Julian thought of it after he heard about another child at MUSC doing a Lego drive.
“He just loves Legos,” Manfru said. “It keeps him entertained, and he can build a 1,700-piece set in just a few hours.”
“Family life changes from the moment you get the news”
Manfru said the cancer has had a significant financial impact on her family, which owns Better View Window Cleaning in Bluffton.
“Families don’t budget for cancer,” she said. “You lose income, there are extra expenses. ... Family life changes from the moment you get the news.”
But, she said, friends and strangers have made a crucial difference in helping them to pay for gas, groceries and other necessities.
Allison Reese, who met the Porto family when she became their client, has brought meals to the family while Julian has been in treatment and also helped spread the word about their fundraiser. She said it’s important to think about other people’s needs during such challenging times.
“The people I did share it with were so glad to help out,” Reese said. “[Bluffton is] such a great town with so many great people. They were so glad to support each other.”
