Columns

Music Brings My Daughter Back to Me

My 24-year-old daughter, Abby, has a terminal disease called Sanfilippo syndrome. It is likened to childhood Alzheimer’s. Children with this disease gradually lose all speech, motor, and cognitive abilities until their bodies shut down completely. This not only strips away Abby’s independence, awareness, and ability to connect to others, but…

It’s Time to Deal with My Anxiety

I’ve known for a long time that I have anxiety. For obvious reasons, it hit an all-time high when my mom was diagnosed with cancer and my sister with Sanfilippo syndrome, which is terminal and has no cure. From that point on, I constantly worried about the future.

Caregivers Should Take Time to Restore and Renew

The role of caregiver is a sacred responsibility. Caring for someone whose well-being rests solely upon you is an incredibly meaningful job. And it is a necessity, as there will always be a population that needs caregivers. Almost everyone at some stage in their lives requires someone to care for…

When Pushing Forward Is the Only Direction to Go

Loss is a theme that persistently has occupied my thoughts lately, not only because of current events in the world, but also because of my personal life. At 24, my oldest daughter, Abby, has Sanfilippo syndrome, a terminal disease that slowly is taking her from me. I’m losing her,…

Life Never Stops with Sanfilippo Syndrome

The current state of the world is difficult for everyone. I’ve thought a lot about my sister, Abby, my family, and other Sanfilippo families. It’s been the perfect time to reflect on what our life is like behind closed doors. Last night, my mom was upset…

I Find Comfort in Believing Loss Can Bring Peace

I’ve experienced several defining moments in my life over the last five years. My mom was diagnosed with cancer in 2015 as my senior year of high school began. We received my sister’s diagnosis of Sanfilippo syndrome, a terminal illness without a cure, in 2017 — the same…

Why I’m Feeling Numb

Do you ever feel like you are walking through life with no emotion? Getting up each day, going through your routine, but with little emotion attached to any part of the day? For some reason, that is my current situation. There are many reasons for me to be emotional each…

Finding the Silver Linings in Heartbreaking Moments

My 74-year-old mom unexpectedly passed away two weeks ago. It is still surreal to even type that statement. She was such an important presence in my life and my family’s life. My daughter Abby, who has Sanfilippo syndrome, had a very special relationship with her. My mom kept Abby…

Finding Your Home Base in an Uncertain World

My favorite part of writing columns for Sanfilippo News is the opportunity to reach people both in and outside of the Sanfilippo community. In this quarantine, we’re all sort of in the same boat. We’re locked in our houses, anxiously watching the news and wondering when exactly we’ll be able…

Finding the Unity in Disability

If I don’t have a topic in mind when it’s time to write a column, I read articles. I look into the lives of other siblings of special needs individuals, delving into the struggles, pains, and joys of their respective experiences. From this, I usually find…

Thank You for the Kind Words, but I Am Not a Hero

I am raising a terminally ill child, my daughter, Abby. This has caused many to call me a hero, warrior, or fighter, among other things. While these are flattering terms and to be taken as compliments, I do not necessarily feel like they describe me. One reason people have used…

Spending Quality Time with My Sister, Abby

I spent a lot of time with Abby a couple of weeks ago. Her caregiver was sick, so I knew I’d be spending several days with her. I had two options: I could be angry at Sanfilippo syndrome, which makes caregiving necessary in the first place, and fall…

The Day I Broke Down and Sanfilippo Won

It’s been a while since I’ve had what I consider a “depressive episode.” I had one this week. Some may argue that feeling low for a few hours shouldn’t qualify as an episode, and I’m not trying to diminish the severity of depression. However, the crippling…

Grieving My Living Daughter

My daughter, Abby, is 24 and has Sanfilippo syndrome, which will one day claim her life. I already feel like she’s gone, though. I had never even thought of the idea of grieving the loss of someone who is still living until now. It is a sad reality, but I…

With the New Year Comes Difficult Feelings

Jan. 1 always brings up difficult feelings for me. Even before Sanfilippo syndrome entered our lives, New Year’s was a holiday for reflection — which isn’t necessarily an easy thing to process. Each year, thoughts about what the coming year has in store and what next Jan. 1 will look…