I received an email from a friend I hadn’t heard from in some time. She told me that her nephew and his wife just had a baby and he has been diagnosed with hemophilia. She had ordered my book to send to her niece and was hoping I would…

My family entered the hemophilia community more than 23 years ago with the birth of my oldest son. During our time with the bleeding disorders community, my wife and I learned to access ports, treat and perform peripheral sticks, and negotiate difficult circumstances. We did not receive a manual titled…

I have begun the year on a high note: I can park both cars in my garage. My family pitched in to help with a clear out. We tossed things we no longer need and donated useful items. It was a fantastic feeling to get rid of the things that…

As early as September, colorful Christmas lights adorn all sorts of spaces in the Philippines. Families begin decorating their homes and stores start to roll out out holiday promotions: holiday-themed drinks, planners for collecting stickers — you name it. At the onset of such traditions, one can feel the so-called…

As the year draws to a close, I cannot help but review the successes and failures of the past 12 months. How do I continue to honor the many roles that I play as a husband, father, caregiver, and pastor? Where is there room for improvement? How can I improve…

As I look back on where I was at this time last year, I can honestly say that 2019 has been a fantastic year. My health has improved tremendously. My book, “Dear Hemophilia, Finding Hope Through Chronic Illness,” has been published. And most importantly, my sons with hemophilia have…

I am scrambling to find my way back to a schedule that includes time to write and research. For some reason, I am finding it difficult to get motivated. I set out to finish my doctorate in ministry from Austin Presbyterian Theological Seminary, and now I have it. What’s…

The holiday season brings happiness and joy to many. Homes are adorned with lights and decorations, and people wear clothing in festive colors. The excitement is contagious. However, many people find this time of year to be exhausting and even painful. When they are living with a rare or chronic…

With so much recent publicity surrounding gene therapy, it’s no surprise that the topic was a major focus of the recent 2019 NORD Rare Diseases & Orphan Products Breakthrough Summit. From diagnosis and clinical trial design to manufacturing, pricing strategies, and ethical concerns, gene therapy — both its high…

My 10-month-old baby, Cittie, is becoming a daddy’s girl. She looks for her daddy when she wants to play. She clings to him when she wants to be carried. She gets uneasy whenever he leaves the room. Jared, my husband, can’t even stand up to go to the bathroom, lest…