Markus Valrey Joseph Boyles Malana “Rhori”
When you meet Rhori or have had the privilege of knowing him, prepare to laugh. His wit and humor will leave you with tears in your eyes. Rhori is intelligent, creative and social; all characteristics his doctors did not believe he would possess before he was even born.
For 9 years his parents, Mark and Vanessa Malana, prayed to have a baby. Fertility pills never worked but “We weren’t going to try IVF. If God wanted us to have a baby, then we would” stated Vanessa.
In October 2014, Vanessa found herself making an unexpected, heart-breaking trip home to the Philippines. Her younger brother Valrey Evangelista Boyles tragically died in a motorcycle accident. While mourning and celebrating the life of her brother, she noticed her stomach was growing. She assumed the worst and returned to the United States, “I was really scared. I thought it was a tumor.” To the surprise and amazement of everyone, a heartbeat was discovered during the ultrasound. She was 5 months pregnant and would be having a boy. They named him in honor of her younger brother.
Further ultrasounds discovered that Rhori’s kidneys were damaged. He was diagnosed with a condition called Posterior Urethral Valves (PUV). PUV are obstructive membranes that develop in the urethra, the tubes that drain the urine from the bladder. The valves can obstruct or block the outflow of urine through the urethra. When this occurs, the bladder, ureters and kidneys become progressively dilated, which can lead to irreversible damage, “It was an emotional rollercoaster. The most heartbreaking was having a heart-to-heart conversation with the doctor to terminate.” Doctors said Rhori would not have a good quality of life: he would most likely be developmentally delayed, have social/emotional/behavioral issues and need a transplant and dialysis. Despite the uphill battle, doctors were supportive of the decision to not terminate the pregnancy. Vanessa recalled, “I knew this was going to be difficult, but I’ve was waiting for this baby.” Overjoyed, Mark and Vanessa welcoming the birth of Rhori on April 3, 2015. Rhori’s medical journey has been filled with fear, tears, successes and victories. Despite living a medical-life, Rhori takes each medication, procedure and surgery with grace.
His medical team and parents have worked tirelessly to keep the functioning of his kidneys last a long as possible. The family is now at the point where a transplant is needed. Mark and Vanessa will have to take an extended leave from work and will temporarily be living near the hospital to support Rhori during his recovery process and follow-up appointments. On behalf of Mark, Vanessa, Rhori and Miko, their family is asking for prayers and donations to support the family during this enormously emotional time. Please follow Rhori’s journey towards transplant and a healthy future!
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.