By Denashia Dunnaville
High school sweethearts, joined together by their soulful hymns, Nicole Ross and Tommy Page became parents of three sons saddled with sickle cell disease.
“It could go from having a great day to being in the hospital,” said Ross. “From a maternal standpoint, the hardest thing to witness is your child suffering.”
Ross’ first child, JonAnthony Page, entered the world on Mother’s Day and at age 18 serenaded by the dulcet tones of Brian McKnight, Ross anticipated finding out the gender of her first born. Instead, she learned that her newborn son had an illness. “We weren’t able to bring him home for almost a week and being a new mother, that was really hard,” Ross said.
In 1993, Ross and Tommy Page knew little about sickle cell disease and how it would affect their lives. Prior to having two more children, Thomas Aaric and Nari’k Page, the couple refused to believe their future children would also battle this heart-wrenching disease. In fact, their biggest concern centered on ensuring that their third child answered to Nadia, rather than Nari’k.
“We just knew if we already had one son, that there was no way it was going to happen again,” Tommy Page said. Unfortunately, each time Ross delivered a new baby boy, the family received devastating news.
According to the National Heart, Lung, and Blood Institute, if both parents carry the sickle cell trait, a 25 percent chance exists that the child will have the disease. This percentage remains constant each time the couple has a child.
When families are affected by sickle cell anemia, it is common to see multiple members diagnosed with the disease, according to Dr. William Owen, academic medical director of the children’s cancer and blood disorder center at the Children’s Hospital of the King’s Daughters.
Ross believes that if she knew all the information about sickle cell anemia that she would have stopped having kids after JonAnthony. “Seeing everything he was going through, I would never want any child to go through that,” Ross said.
Sickle cell anemia is a gene-inherited disease where the red blood cells are hard and sticky causing the cells to form a C-shape. Prior to having children, Ross was aware of carrying the sickle cell trait because her father carried the trait. “It wasn’t even a discussion,” Tommy Page said. “I had no idea when Nicole asked me if I had the trait and I didn’t put much thought into it at the time.”
According to Medline Plus, almost 1 in 12 African Americans carry the sickle cell trait.
“All children born after 1989 in Virginia are tested for sickle trait at birth,” said Dr. Owen. “If you were born before then, then you have to get a blood test done called a hemoglobin electrophoresis.”
Trying to create an effective plan for all three kids, Ross was like attempting to piece together a puzzle that is not meant to fit. Sickle cell disease affects individuals differently, which causes various reactions to treatments. “Having three children with sickle cell anemia affected my daily life to the point that I was not able to work,” Ross said.
According to the research conducted in California between 2005 to 2014 by the Centers for Disease Control and Prevention, children ages 0-16 are averaged to visit the emergency department less than one time a year.
When the three sons reached the tender ages of two, four and seven; the Page family went to the hospital on an average of four times a year and stayed for at least a week.
“I’m not able to do everything that other people can do, like playing sports all the time, because I can’t,” said Nari’k Page, youngest son of Ross and Tommy Page.
The shape of the red blood cells constricts the flexibility needed to flow in the body. This causes the cells to create a blockage of oxygen, which leads to a severe pain crisis.
“Some people call sickle cell anemia the invisible disease,” Nari’k said. The effects of his disease have changed the whites of his eyes to the soft color of lemon chiffon. “Every day I’m doing regular things and then all of a sudden I could just be going through a crisis.”
Ross and Tommy Page’s first introduction to the seriousness of sickle cell disease came early in their parenthood. Their first son, JonAnthony, waddled around at the young age of six months until he experienced his first sickle cell crisis. His first crisis turned his tiny hands and feet to the size of softballs; after his battle against hand-foot syndrome, he reverted to crawling. Neither son experiences the same sickle cell crisis.
“I remember being in so much pain that I had to ride in the ambulance,” said Thomas Aaric Page, middle son of Ross and Tommy Page. “For me, the ambulance was just a long road of pain that you don’t want to be on.”
For the Page family, the hospital became their second home. The fight with sickle cell anemia resulted in multiple surgeries.
“I think the toughest part for me was that every time they had a surgery I had to sign a consent saying they may not come out,” Ross said. Nari’k underwent five surgeries including a septic hip at two years old. Thomas Aaric underwent two surgeries and JonAnthony endured six surgeries: splenectomy, gallbladder removal, skin graft, two biopsies, and toe amputations.
“For a 13-year-old boy to lose all 10 of his toes in the midst of all the other stuff he had been through, it was tough,” Tommy Page said.
JonAnthony received a wish by the Make-A-Wish Foundation due to his declining health. He used his wish to go to a Lakers game and received autographs from the players. The Make-A-Wish Foundation provided the family with an all-expenses paid trip including a limo ride.
Despite his decline in health, they were not ready to give up on their first child. The family continued to explore options to cure JonAnthony. Tommy Page decided to drive JonAnthony to Atlanta to participate in a stem cell procedure.
“It was almost like he could now gauge doctors by their faces of what type of news they had for him,” Tommy Page said. Although the stem cell research proved successful for other individuals, JonAnthony could not satisfy the necessary requirements.
The qualifications for the stem cell procedure specified that JonAnthony needed a sibling who did not have sickle cell disease.
“Growing up with two other brothers was like the best thing of war,” Thomas Aaric said. “JonAnthony brought us together because he always made sure we were doing something.”
On Jan. 21, 2010, JonAnthony passed away after a 15-year fight with sickle cell disease leaving behind the music he created in lives.
“I put sickle cell to death with JonAnthony,” Ross said. “I had two other sons but I didn’t know what to give them.” Although Ross has a difficult time discussing sickle cell, she continues to be an advocate for the fight against sickle cell disease. She is starting a JonAnthony D. Page Foundation along with a former friend of her late son. Tommy Page uses digital platforms to raise awareness about sickle cell anemia. Thomas Aaric and Nari’k participate as spokespersons at blood drives sponsored by Virginia Blood Services.
“One thing about sickle cell disease is that people just don’t talk about it enough,” Dr. Owen said.
According to the National Institutes of Health, sickle cell disease affects 70,000 to 80,000 Americans making it the most common inherited blood disease in the United States.
“We didn’t get a chance with JonAnthony to make it to his adulthood to see what he was going to do with his journey, so we can only go through this process seeing how this disease is going to affect them through their adulthood,” Tommy Page said.
Ross’ new marriage also delivered the daughter she hoped for during her third pregnancy. Bereft of sickle cell anemia, this bright-eyed 6-year-old also sings soulful hymns every Sunday morning.
