Brittany Sanchez has two young boys with hemophilia, a genetic disorder where blood doesn’t clot normally, but she wants them to be typical boys, allowing for occasional rough play for fun.
“They are still boys and I want them to be boys,” Brittany said of Zayden and Henry while awaiting the start of the inaugural Bleeding Disorders Patient and Family Education Day on Saturday, April 7. “They are going to soccer and football and I want them always to remain safe… we want them to be normal and act normal, but know they are a little bit different.”
The Bleeding Disorders Patient and Family Education Day was an opportunity for parents to get advice and learn the latest information about caring for children with hemophilia and von Willebrand disease, bleeding disorders that prevent blood from clotting properly. The event was open to the 350 Valley Children’s patients with the blood disorders, featuring break-out sessions for adolescents, to teach them to play safer as they grow older, learn about social media and cyberbullying.
Valley Children’s hosted the event for families because typical clinic appointments don’t always allow doctors and nurses to speak with patients about some of their daily needs. Ordinarily, doctors and nurses are focusing more on the illnesses, said Dr. Vinod Balasa, medical director of the Cancer and Blood Disorders Center at Valley Children’s Hospital.
“Instead of focusing on the disease process, we are talking about the practical issues and how to take care of everyday things,” Balasa said. “This is not just about clinical care, but to educate the community.”
Balasa praised his staff and the Hospital’s administration for hosting the event, which attracted 110 patients and family members from as far away as Shafter in Kern County and Oakdale in Stanislaus County.
For Brittany, the event was an opportunity to learn about resources she didn’t previously know existed and get more information to help her boys cope at home and school. For her boys, it was an opportunity to see other kids with the same or similar illnesses and realize they aren’t alone.
“This is a way to find out different things I can take home and talk to dad about, maybe try some new things,” she said.
Zayden, 6, was diagnosed at Valley Children’s when he was six months old after he experienced swelling to a bruise on his leg that wouldn’t go away. Brittany had Henry, 4, tested at birth.
“They come home on Friday and they say they are tired,” Brittany said as her boys were frolicking at the table. “They are still boys and we want them to be boys.”
Arnulfo Gomez, 14, had longer-than-normal nose bleeds. His father, Arnold, had the same problem as a high school athlete. Arnold recalls his nose bleeds delayed his high school wrestling matches, but he had no idea why the nose bleeds lasted such a long time.
About four years ago, he and Mayra noticed Arnulfo having the same problem. He was diagnosed at Valley Children’s with von Willebrand disease. Arnold later tested positive, too, learning the reason for his teenage nose bleeds.
The family said the Valley Children’s event gave them an opportunity to learn more to help Arnulfo navigate the often bumpy adolescent years.
“This was an opportunity to brainstorm all the information,” Arnold said.
Mayra credits Valley Children’s for giving their family the confidence and access to a clotting medication to more easily handle Arnulfo’s nose bleeds.
“He had a lot of nose bleeds and nobody had an answer,” she said. “We were glad to finally get a reason for why the nose bleeds lasted so long. Now, with the medication, we can stop it.”