High school junior Miguel Angel Perez stands tall and wears a big grin — you’d never know this 16-year-old is facing a life-threatening disease. Don’t judge a book by its cover.
Last winter and into the spring, Miguel fought several colds that seemed to last too long. His mother, Juana, took him to the doctor knowing something wasn’t right. The teenage athlete had unusually high blood pressure. After several weeks of monitoring the hypertension, the doctor ran blood tests and discovered Miguel’s creatinine levels were high.
Creatinine is a waste product of creatine that is used to supply energy to the body’s muscles. Creatinine is removed from our bodies entirely by the kidneys, according to the U.S. National Library of Medicine. So if the creatinine levels in the blood are high, it’s an indication kidney function is affected.
In March, Miguel underwent a biopsy and scan under the supervision of his nephrologist in Las Vegas. Following those results, he was more specifically diagnosed with focal segmental glomerulosclerosis, FSGS, which is scar tissue in the filtering unit of the kidney. The nephrologist also broke the news that Miguel’s kidneys are undersized for his tall frame. He has the kidneys of a 9-year-old.
Referred to a doctor at Stanford University School of Medicine, Miguel and his mother learned his kidneys were functioning only at 25 percent. Because his kidneys are undersized, his medical team is forgoing any dialysis in favor of a transplant – hopefully within the next two years.
His aunt Robin Anaya said Miguel is near the top of a transplant list because he is a minor. The family said they hope to receive a phone call from Stanford in the next two years even though it means they have to be ready at a moment’s notice to rush to the Bay Area and stay for about two months while Miguel heals from a major surgery. If you add in the monthly trips to the nephrologist, the costs quickly escalate.
To help offset costs, Robin is organizing a fundraiser to help her sister-in-law and nephew bear the burden of this disease. The yard sale is planned for Nov. 21, and together, Juana and Robin are selling tamales. They already have more than a dozen orders to fulfill.
To her amazement, Robin has even had two people — unknown to Miguel or even the family — generously offer a kidney for donation.
“My eyes started watering while I read that,” Robin said. “I was just amazed people would do that.”
Both Miguel’s parents are undergoing genetic testing to see if they are ideal donors, and the family is working with a medical social worker to help them navigate the road to donation. Juana, who has a calm but strong air about her, said she’s “very devastated.”
With Robin translating, Juana detailed how she and Miguel’s father will conference with the medical team at Stanford University to review results and decide the best possible treatment. She said she’s ready to undergo more testing in order to help heal Miguel.
Even so, she and Miguel know the young man will need another transplant in 15-20 years.
He seems to be taking it all in stride, but then a shadow of seriousness settles on Miguel’s face as he talks again about the donation list. He explained that in the world of donation patients, the legal age of adults is considered to be 17, and he said, adults are no longer given preferential treatment like minors receive. Miguel turns 17 in January.
“Will they put me down at the bottom of the list?” he asked.
Robin also set up a bank account at Wells Fargo for donations to Miguel’s treatment costs. The account number is 3830079921.
The yard sale will be held Nov. 21 at Farmers Insurance Agency, 719 W. Williams Ave., starting at 8 a.m. Donations for the yard sale or tamale orders can be made by contacting Robin Anaya at 775-294-4628.