Rylen's Story

Q. What condition was your child born with?

Rylen was born with Hemophilia A, a rare bleeding disorder that results in prolonged bleeding from even minor injuries, internal bleeding, hemorrhaging, hematomas, joint damage, among other complications.

Q: What were/are some of the biggest challenges that came with the diagnosis?

Those living with Hemophilia have to take extra precautions with many normal activities that most people don’t think twice about. Raising a child with Hemophilia means worrying when they learn to walk, ride a bike, or play at the park. It means constantly being on high alert, prepared for an emergency situation at all times. 

Q: How has the diagnosis impacted your day-to-day life?  

Now that he’s a speed racer, crawling all over the place and getting into everything, we have to keep a close watch. Whenever we make a trip out of the house, we bring along our custom “first aid kit” and his medical paperwork. Vacations require transporting his factor medication, ensuring it stays refrigerated and available at all times.

 Q: What do you wish other people would know about your child’s medical?

Medical advances continue to bring more solutions and hope. The treatment options have come a long way over the years. Children with Hemophilia are capable of having a normal childhood, enjoying extracurricular and physical activities, as long as certain precautions are taken. As much as I may want to keep him locked in a bubble, thankfully I don’t have to.

 Q: In what ways has your child inspired you?

Rylen has been poked and prodded since birth — intensive bloodwork and testing, factor infusion, CT scans, hospital admissions — and yet he’s remained a happy little guy through it all. I have faith he won’t let his diagnosis define or limit him!