Columns

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…

A few years ago, I was chatting with a friend who was the primary caregiver for a family member with a terminal condition. Even though our stories were different, we had enough in common with caring for a terminally ill loved one that we could connect and have the “real…

The holidays can be a difficult time for me. My sister, Abby, was diagnosed with Sanfilippo syndrome four years ago, and since then, I find my heart pulled in two directions during the holiday season. On one hand, I’m grateful for the years I had with her before Sanfilippo…

It happened. It came on so gradually I didn’t even comprehend what was happening until it was there. But there is no denying it now: Will has a mustache. I can’t ignore it any longer that my baby boy has a mustache. He has pimples. He has hair in new…

I received a package in the mail last week. It was a test that I will be able to take and send to a lab to find out if I am a carrier for Sanfilippo syndrome. My sister, Abby, has this rare and terminal disease for…

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…

I was sore. It was nothing major, just the usual muscle aches following a good workout when you’ve been off for a while. It was late August, and the kids had returned to school. Summer is hard enough as a full-time caregiver to a child with special needs, but…

In my previous column, I discussed the importance of finding a balance between all of the emotions that come with being a Sanfilippo sibling. There are so many ups and downs in this life, and finding a place in between those extremes is crucial. My sister, Abby, has…

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 was my Wednesday afternoon: I’m changing my son’s diaper while talking on the phone with one of his specialists to schedule his annual visit. I glance at the clock — his speech therapist will arrive in just 10 minutes and he still needs his snack. I finish the…

As a Sanfilippo sibling, I experience many emotions every day. Each feels like a weight on my shoulders, and it takes a balanced mindset to juggle all of them. This is something I still struggle with. My sister, Abby, has Sanfilippo syndrome. It is a rare, terminal disease that currently…

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…

“Don’t worry, they won’t go to college in diapers!” It’s the statement so many people give to parents as they go through the often difficult adventure of potty training. In the United States, potty training is normally started between 21 and 36 months, though only 40-60% of children…

The photo below is one of my favorites of my sister and me. It was taken at my grandparents’ house several years ago, and it often brings me comfort because you can clearly see the love between us. Sanfilippo syndrome takes a lot of things away from our relationship, but…

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…

My favorite animals are sharks. They’ve always fascinated me. An interesting fact I’ve learned is that sharks can smell blood in very small concentrations in water — as low as one part per million! As I contemplated this column, this shark fact, a Sanfilippo event I attended last month,…

Summer — it’s a season of lots of fun, but also lots of difficulty for my family and many others like us. As I wrote last month, my 11-year-old son, Will, has Sanfilippo syndrome, which makes summer a particularly tough time for me as a caregiver. In addition to…