If you didn’t know it, you’d never guess that Alejandro Munoz is in a battle.
Seeing his infectious grin and charmed by his 10-year-old exuberance, you’d think that he’d already won the war his body has waged since birth.
Truth is, the Jefferson Elementary fifth-grader is fighting Stage 4 kidney disease and waiting for a life-saving kidney transplant.
Family and friends have formed “Team Alejandro” to assist his mother in raising money to cover the transplant-related expenses. Splashed across the front of the team shirts Alejandro designed is the prominent green ribbon promoting kidney disease awareness and the word “Believe” signifying the youngster’s courage.
“I picked out the word ‘believe,’ because I believe I can get through a transplant,” he says.
The avid San Francisco 49ers fan also believes that one day he will play tackle football like his sports heroes. For now, much to his frustration, he has to settle for flag football.
That, a restricted diet and, more recently, bouts of overwhelming fatigue are his biggest challenges, says his mom, Kyndra Boyd.
“But he doesn’t let any of that stop him,” she says. “He’s my strength. I wish I was as strong.
“My biggest challenge has been watching my son go through this and not being able to fix it. And then there’s the anticipation of the transplant.”
She worries too every time Alejandro gets sick. Afraid he’ll land in the hospital, like he did earlier this year.
“It’s been a rollercoaster ride," she says. “I’m ready for the ride to come to a stop and stay parked.”
An abnormality in Alejandro’s urinary tract was detected when Boyd was 19 weeks pregnant with the boy.
“We didn’t know the extent (of the abnormality) until his birth,” she says.
When Alejandro was born April 21, 2006, it was discovered that the valve-like mechanism where the urethra joins the bladder did not work, causing a backflow of urine into the kidney.
When he was 2 years old, he experienced kidney reflux again and underwent a procedure to unblock the urethra.
Boyd says the disrupted kidney function left the kidneys scarred. The damage was so severe the disease immediately went into Stage 4.
“We’ve known since he was born that he would one day need a kidney transplant or dialysis to live,” says Boyd.
“One day” is no longer someday.
Last spring, Alejandro’s doctors at Doernbecher Children’s Hospital in Portland recommended gearing up for a kidney transplant.
Alejandro’s kidney function is at 24 percent. When function deteriorates to 20 percent, his name will be put on a waiting list for a transplant.
The prognosis, Boyd says, is that Alejandro will need a transplant within 18 months.
As puberty looms, his kidneys will not be able to keep up with the changes in his body. If his kidneys deteriorate even more and function drops to 15 percent, dialysis would be the next course of action.
The surgery, Boyd hopes, will come before that happens. She considers it “a preemptive” strike to avoid the grueling regimen of dialysis and preserve Alejandro’s childhood and active lifestyle.
Boyd, a single mother and sole provider for Alejandro and his 7-year-old sister, Jocelyn, and 5-year-old brother, Jorge, was referred by the Doernbecher team to the Children’s Organ Transplant Association, a national nonprofit that helps families organize fundraising events and manage charitable contributions.
Fortunately, Alejandro’s insurance will cover the cost of a transplant, which can often exceed $500,000. However, there is a long list of transplant-related expenses, including travel to Portland, plus lodging and meals while there. If the kidney comes from a live donor, they will also have to pick up the donor’s tab.
In addition, Boyd, a pharmacy technician, will be off work without pay for three to four months while she cares for her son after the transplant. She said they were told to plan on four to five weeks in Portland, with return visits weekly for the first month after surgery and every two weeks over the next two months.
Under COTA’s guidance, Team Alejandro was formed in August. Since then, the 12-member squad, which includes Boyd’s sisters Nicholle Zamores and Cheri Garduno, has sold Team Alejandro T-shirts, washed cars, held a yard sale, and cooked and sold hundreds of tamales in an effort to raise $50,000.
So, far, the team has raised almost $8,000 — 15 percent of its goal.
“Only $42,000 more to go,” says Boyd, who adds that COTA also offers a challenge grant of up to $5,000.
Team Alejandro has until March to reach the $50,000 goal under COTA guidelines.
COTA is a 501(c)3 organization. All donations are tax-deductible, and the funds families receive are not considered taxable income.
Garduno says COTA has been invaluable in guiding the fundraising campaign. And as administrator of the account, COTA ensures that funds are raised ethically and used appropriately, she added.
The account is also set up to cover a lifetime of transplant-related costs.
Boyd knows that a transplant is a treatment, not a cure. Alejandro will still have chronic kidney disease, which may mean a second transplant down the road. And then there’s the possibility of rejection.
In an effort to stave off rejection, Alejandro will require 44 doses of meds daily for the first few months — a prospect that Alejandro will likely take in stride.
“Shots and meds are all he’s known his whole life,” says his mom.
In addition to the daily shots and fistful of meds, Alejandro started a growth hormone a few months ago. After being in the 11th percentile his entire life, he is now in the 33rd percentile in height.
Alejandro’s belief that he will be “a completely new kid” who will once again be able to keep up with his friends, run a fast mile, and play tackle football without getting tired is worth the shots and medicine.
“I don’t care about all that,” he says. “I can’t wait until I get my transplant.”
— Reach Grants Pass freelance writer Tammy Asnicar at email@example.com.