Columns

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…

My sister Abby has a rare, neurodegenerative disease called Sanfilippo syndrome. She was diagnosed in 2017, and life hasn’t been the same since. I’ve spent considerable time reflecting on my role as her sister, not only as a Sanfilippo sibling, but also as an advocate to spread awareness of…

My 25-year-old daughter Abby has a rare, terminal disease called Sanfilippo syndrome. The best way to describe the disease is to compare it to Alzheimer’s, but in children. It robs her of cognitive abilities, including speech, attention, and memory, and motor abilities, including walking, mobility, and motor planning. Sanfilippo syndrome…

Many parents will agree that our child’s diagnosis with a terminal illness was the worst news we could ever receive. I have been living this reality now for a little over two years. My daughter Abby has Sanfilippo syndrome, a rare, genetic, terminal disease that is similar to Alzheimer’s.

This year’s Thanksgiving was difficult. I lost my grandmother in March, so grief overshadowed a lot of the gratitude that should be at the forefront of this holiday for me. However, having grief at the center of Thanksgiving, among other holidays, is common for those affected by terminal…

Raising a special needs child is challenging. It is physically tiring and emotionally draining. But it is incredibly rewarding, too. Some days leave me feeling like I know nothing and can’t do anything right, while others are positive and uplifting. This is the roller coaster that parents of special needs…