There isn’t anything Lisa Largue wouldn’t do for her twin teenage boys — especially since one of them is in dire need of a kidney donor.
Largue is the mother of twins Matthew and Miguel Bustamante, 18, who will celebrate their 19th birthday June 22. The greatest gift anyone could give is a kidney for Matthew, who was diagnosed with Chronic Kidney Disease — the gradual loss of kidney function — in June 2017, and is now in end-stage renal failure. In order to survive, Matthew will need to do dialysis, or a kidney transplant from an A or O (positive or negative) living altruistic donor.
Largue, 45, who used to live in Flushing, now resides in Orlando, Fla., where Matthew is receiving treatment at the Florida Hospital in Orlando for his condition. In February, she created a GoFundMe page to raise $25,000 for Matthew’s medical expenses and to send his twin brother Miguel to college. So far, Largue has raised $14,348 from 200 donors in the past three months. “I’ve written to anyone and everywhere,” said Largue. “It’s surreal from a mom’s perspective because it’s your child. I would think most mothers unconditionally love their kids and would do anything, and when you can’t, it’s not a good feeling.”
Unfortunately, Largue is unable to help Matthew since she was diagnosed with kidney disease and is in the process of seeing a doctor and having a biopsy done. Other family members tested have been ruled out due to an unsuccessful match, except for Matthew’s brother. However, Miguel is unable to donate given his age and doctors don’t want to put him at risk if kidney disease is genetic, Largue said.
Matthew, a typical 18-year-old, with an outgoing personality who loves to play basketball, has an online blog where he posts about CKD and his search for an altruistic donor.
“I can’t do much anymore,” Matthew said on his blogspot. “My disease makes me tired and weak, but a transplanted kidney could cure all of that. A new kidney could save my life. I want to be a filmmaker someday. Hopefully, I will make that happen.”
At 5 feet 9 inches tall and 118 pounds, Matthew has found that his appetite has decreased and he spends the majority of the day sleeping in bed. Aside from kidney disease, he also has allergies, which doesn’t allow him to eat much. He is currently taking three to four different medications daily, according to Largue. He also uses an inhaler for Esophagitis, which causes painful, difficult swallowing and chest pain.
“He was beyond energetic, into sports and active,” said Largue. “This is the kid that was always playing sports, and now he doesn’t do anything. Some weeks he’ll eat good and snack in-between, other weeks he won’t eat and I’ll have to nag him.”
Living in Florida and unemployed, Largue is depending on the GoFundMe donations to help Matthew get the care and kidney transplant he desperately needs.
Since she left Rockland County, where she used to live and work as a medical assistant for pediatrics at the Boston Children’s Hospital, Largue has been receiving temporary continuation health coverage under COBRA -- the Consolidated Omnibus Budget Reconciliation Act. The federal law gives workers and their families who lose their health benefits, the right to choose to continue group health benefits provided by their group health plan for limited periods of time under certain circumstances: voluntary or involuntary job loss, reduction in the hours worked, transition between jobs, death, divorce, and other life events.
Largue is currently paying $2,400.45 a month for medical expenses, until Matthew is qualified to receive to Medicare until the first day of the fourth month of dialysis. She said if Matthew has the kidney transplant surgery, Medicare will pick up 80 percent of the cost, but might not provide coverage for medications that she will have to pay out-of-pocket post-transplant.
In addition, Largue had to pay for donor expenses — medical and surgical procedures, and travel and lodging. If Matthew has to do dialysis in the comfort of his home at night, the cost of nurses visiting their home, a trainer, numerous medications, and certain types of foods will come with a hefty price as well, Largue said.
She is currently searching for a job with insurance, but is afraid to leave Matthew since he is not doing well.
“This is where it gets complicated,” said Largue. “I just wish I could’ve given it to him. I have to keep it together for him and my other son, and hopefully we find a match.”
Reach reporter Carlotta Mohamed by e-mail at cmoha