Get regular updates to your inbox.
My cancer has returned. My schedule is filled with chemotherapy and doctor appointments again. Currently, I receive chemotherapy infusions every other week, and my understanding is that this will be my life going forward until I decide I need a break. I have an inoperable tumor right next to…
We do not live in a world of absolutes, a world of only black and white, right or wrong, good or bad. Instead, there are mostly shades of grays, or different versions of the truth. Each version is based upon personal experiences, making it mostly subjective. This should give us…
Sanfilippo syndrome is a rare, genetic disease that typically presents itself in children when they are either toddlers or adolescents. Children with this disease commonly exhibit hyperactivity, cognitive decline, sleep problems, diarrhea, and declining motor skills. Unfortunately, these individuals often pass away either before or during their teenage…
Recently, the family of American actor Bruce Willis announced he has been diagnosed with aphasia. The news has raised some discussion about the condition and how it affects people. Aphasia is a language disorder that is brought on by brain damage, often making a person unable to express themselves…
It’s hard to believe the world is still in the midst of a pandemic that reared its ugly head two years ago. These unprecedented times have disrupted so many lives in myriad ways. One specific way it affects the rare disease community is that many fundraisers have understandably had to…
My daughter Abby has Sanfilippo syndrome, which is a terminal, genetic disorder. She will likely leave this earth before me. That thought alone is quite a lot to absorb and process. It forces me to think long term. How many more years will she be here with me? What…
This is an update to my last column. When we left off, my family was about to leave our home in Houston, Texas, and fly to California, where our daughter Abby is a participant in a clinical trial. I described my anxiety about flying with Abby and all…
If you have been following my column, you know that my 26-year-old daughter, Abby, has been on the verge of being accepted into a clinical trial for Sanfilippo syndrome. I am here to announce that it’s official! She was recently accepted, and we will soon venture west again to…
What bookends to live between — diagnosis and death. This is a hard place to be, no matter where you fit in — the patient, the caregiver, or a family member or friend of any of these people. No one ever wants to be here, but sometimes it’s where we…
This is a follow-up to my previous column about my 26-year-old daughter, Abby, potentially being accepted into a clinical trial. To recap, my husband and I were recently notified that she might be accepted into a clinical trial for a drug called Kineret (anakinra). Researchers will study…
Get regular updates to your inbox.