Columns

Living in the Space Between Diagnosis and Death

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…

Finding Balance Among My Many Emotions

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…

Lessons Learned From Unanticipated Positive Outcomes

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…

Some Kids Might Go to College in Diapers

“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…

Sanfilippo Can Get in the Way of Celebrating

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…

Helping Others During Times of Grief

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…

How Do You Respond to Grief?

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…

Sanfilippo Families Are in This Fight Together

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…

I Wish I Could Read My Daughter’s Mind

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,…

The Things We Carry: Welcome to ‘Plot Twist’

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…

A Thank-you Note to My Biggest Supporter

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…

What If My Child Did Not Have Sanfilippo Syndrome?

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…