Kelly Wallis,  —

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…

I recently received exciting news! My 26-year-old daughter, Abby, has been selected to potentially participate in a clinical trial for a drug to help manage or minimize symptoms of her disease, Sanfilippo syndrome. My husband inquired about the trial over a year ago, and they contacted us recently…

Grief has been a prevalent part of my life for the past year or so. My mom unexpectedly passed away early last year, and because of the pandemic, her burial and memorial service were postponed to this summer. I have spent a lot of time planning her service. This…

I am tired. Caring for my 25-year-old daughter, Abby, whose body is giving up on her, is tiring. She has Sanfilippo syndrome, a cruel, relentless disease that is stealing her from me. When I have time to sit and gain perspective of the situation and face the fact that…

I often think about grief, a feeling that everyone experiences at some point in their lives. Whether it involves the loss of a pet, parent, spouse, sibling, child, friend, or marriage, grief is unavoidable. Because it is such a common emotion, one would think that most people could easily discuss…

Most parents experience a time when they wish they could read their child’s mind. For example, when children are infants and can’t speak yet, wouldn’t it be great to know what they are thinking? Parents of special needs children may experience this feeling, either sometimes or most of the time,…