Columns

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…

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…

Y’all. I am tired. My son’s birthday was last week. Will turned 11. This was going to be a column about the bittersweet nature of birthdays when it comes to progressive, terminal diagnoses that have no treatment. About being so thankful for another year while also realizing that it brings…

It’s important in all aspects of life to find your people. For example, I have my teacher friends, my college friends, and now, we have our Sanfilippo warriors. When someone you love is living with a rare, terminal disease, it’s an indescribable feeling to find people who are walking a…

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,…

Motherhood is a gift. Having the opportunity to raise children is an honor. They need so much care, but they give so much back in return. The love between a mother and child is profound, and I am so appreciative that I have been able to experience it. I have…

Oh, the things my arms have held. I’ve carried my beloved stuffed animals and blankies, my school books and book bags, my moving boxes and furniture, and my babies. Emotionally, I’ve carried a sense of purpose, a sense of pride, a sense of responsibility. But the most significant thing I’ve…

The four years since my sister, Abby, was diagnosed with Sanfilippo syndrome have been a journey, to say the least. She has lost most of her speech and will continue to lose basic life skills as the disease progresses. Our family has had to adjust to a new normal…

Living with an adult child who has a terminal disease is challenging. It demands patience, flexibility, kindness, perseverance, and advocacy. I don’t claim to always possess all of these attributes, but I try my best. Life gets in the way, though. I work outside the home and try to live…

My daughter Abby, 25, has Sanfilippo syndrome. It is a genetic, terminal disorder likened to Alzheimer’s disease. She was not diagnosed until 2017, at the age of 22. However, she was diagnosed with autism at 4, so for many years, I attributed her behaviors and delays to…