Columns

The Hard Part Is Not What We Thought It’d Be

When people learn what Sanfilippo syndrome is and that our 12-year-old son has it, their reactions are immediate. “Oh, I’m so sorry.” “I can’t even imagine.” “That must be so hard.” Sanfilippo is a devastating disease. There’s no way around that. It’s devastating to the child, feeling frustrated as…

My Sister’s Sanfilippo Helps Me Guide My Students

I have a job that I love. This is my third year teaching first grade, and it’s rewarding and challenging in so many ways. From day one, my students (or my “kiddos,” as I call them) learn that kindness is our classroom’s golden rule. I remind them each and…

Trying to Live With Sanfilippo but Without Constant Worry

Raising children is a big responsibility. Parents experience so many emotions while rearing children — joy, sadness, frustration, gratitude, fear, and more. So many things can go wrong. So many reasons to worry. I’m not a worrisome mother; I try not to sweat the small stuff. This is partly due…

We Live in a World Full of Gray — Embrace It

We do not live in a world of absolutes, a world of only black and white, right or wrong, good or bad. Instead, there are mostly shades of grays, or different versions of the truth. Each version is based upon personal experiences, making it mostly subjective. This should give us…

It’s 1 AM, so I Must Be Tired

It’s 1 a.m. on a Wednesday, and I’m sitting in my living room debating my options while listening to my 11-year-old son repetitively clap and growl over the baby monitor we still keep installed in his room. Will isn’t sleeping tonight. Which means I’m not sleeping tonight. Although none of…

The Challenges of Caring for an Adult With Sanfilippo Syndrome

Sanfilippo syndrome is a rare, genetic disease that typically presents itself in children when they are either toddlers or adolescents. Children with this disease commonly exhibit hyperactivity, cognitive decline, sleep problems, diarrhea, and declining motor skills. Unfortunately, these individuals often pass away either before or during their teenage…

What Will Our Daughter Remember?

Parenting a child with Sanfilippo syndrome results in many forms of grief. There is the diagnosis grief, when you mourn the loss of the future you thought your child had. There is regression grief, as you watch your child’s skills slip away day by day, stolen by a monster you…

When I Think of My Family, I Often Worry

I have always struggled with anxiety. I have also always been close to my family. When my sister, Abby, was diagnosed with Sanfilippo syndrome — a terminal illness with no cure — those two things teamed up to challenge my mental health in a way I’d never experienced before. When…

How Aphasia Can Affect Those With Sanfilippo Syndrome

Recently, the family of American actor Bruce Willis announced he has been diagnosed with aphasia. The news has raised some discussion about the condition and how it affects people. Aphasia is a language disorder that is brought on by brain damage, often making a person unable to express themselves…

Moving From Helpless to Helped

One of the most difficult things about having a child with an incurable terminal condition is the feeling of helplessness that comes with it. When Will was diagnosed with Sanfilippo syndrome seven years ago this month, it was crushing to realize that we were going to bear witness to the…

Emotional Nights at Home With My Sister

Since I moved out of my parents’ house, I love coming home on the weekends. I get so excited driving home and thinking about spending much-needed time with my family. My sister, Abby, has Sanfilippo syndrome, a rare, terminal disease that currently has no cure. Along with other…

Our Miracle Is Already Here

While we may not be talking about Bruno, it’s no secret that Disney’s latest animated offering, “Encanto,” is on the tip of many tongues, especially in families with young children who are captivated by Lin-Manuel Miranda’s songs. Like many parents of young children right now, my car is filled daily…

The Gift of Grief Is Connection

March 5, 2015, was the worst day of my life. I had stumbled upon a story from the “Today” show about a little girl with Sanfilippo syndrome, and my heart instantly knew what my brain wanted to deny: My 4-year-old son, Will, had the same rare genetic disorder, which…