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A parent of a special needs child or someone who works in the public school system would undoubtedly be familiar with the letters IEP, which stand for Individualized Education Program. An IEP is a plan used to help ensure that a student with a disability receives accommodations, therapies, and goals…

I started seeing a therapist a few weeks ago. It’s something I’ve debated doing since my daughter, Liv, was diagnosed with Sanfilippo syndrome three and a half years ago. Many friends and family members mentioned that it would be a good idea, given the neurodegenerative and terminal nature of…

You know the saying about how to eat an elephant? One bite at a time. Whenever you are faced with something monumental, a task or challenge that feels too big to manage, you must break it down into smaller pieces. This has resonated with me recently. My husband and I…

Many parents find feeding a toddler challenging, resulting in frustrating mealtimes. At this age, kids can be very picky and easily distracted. For our 5-year-old daughter, Liv, who has Sanfilippo syndrome, almost every meal is a struggle. As a nearly full-time stay-at-home mom, I tend to organize and prepare…

When our daughter, Olivia, was diagnosed with Sanfilippo syndrome three years ago at the age of 2, it felt like a dark cloud had settled over our family. During the week that followed, we took time off work and, through tears, shared the news with close family and friends,…

Back-to-school time is upon us. While some families are looking toward openings around Labor Day, others are already scrambling to get necessary clothes and supplies and adopt new routines. Kids will be meeting their new teachers and making new friends. Older students might be starting various extracurricular activities and bonding…

My 5-year-old daughter, Liv, has Sanfilippo syndrome, a form of childhood Alzheimer’s. In her current phase of the disease, she’s hyper, impulsive, and has no sense of danger. Cognitively, she’s akin to a 1 year old. That makes play dates and birthday parties a large challenge. Liv…

My daughter Abby has Sanfilippo syndrome, which is rare, genetic, and terminal. We’ve lived with the condition for eight years now, since her diagnosis in 2017, at age 22. In some ways, strangely, I feel less capable of handling this awful disease now than I was eight years…

I used to be a career-driven woman. I graduated from pharmacy school in 2011, worked retail pharmacy for four years, then transitioned to a hospital setting and completed a post-graduation pharmacy residency. In 2019, when I became a mother eight years into my career, I envisioned myself as being a…

It wasn’t until I started sharing the story of my daughter, Liv, and her Sanfilippo syndrome on social media that I heard the phrase “glass child” for the first time. I’d posted about how special Liam, Liv’s brother, is. Someone commented on my post, reminding me to pay extra…

Parenting children is challenging. Parenting children with special needs or developmental delays is even harder. You must consider many factors: age, ability, environmental and situational dynamics, setting, time of day, and more. My oldest daughter, Abby, was immediately admitted to the neonatal intensive care unit after she was born and…

It’s been more than three years since our daughter, Liv, was diagnosed with Sanfilippo syndrome type B. And in that time, our family has raised close to half a million dollars — $452,000, to be exact — for the Cure Sanfilippo Foundation. This money goes toward research and support…

“I can’t wait to be out of the diaper phase,” I remember thinking as we prepared to potty train our daughter, Liv, when she turned 2. I think it’s natural for any parent to look forward to the next phase, even though the next phase always comes with a new…

March is here, my least favorite month. My mother passed away on March 29, 2020, and I’ve hated this month ever since. Because she passed at the end of the month, I’m forced to anticipate this anniversary for almost all of March. My mother was the most loving, caring, and…

“I think Liv has a lysosomal storage disorder,” the text message read. It was from a stranger — a pediatric neurologist and friend of my sister-in-law — who had seen a photo of our daughter, Liv, on Facebook. Liv was 2 at the time and had been through several tests…

The rare disease community includes some of the strongest people I know. Upon entering this clan in 2017, after my sister, Abby, was diagnosed with Sanfilippo syndrome, I found comfort in reading works by other rare disease siblings and family members. When I began this column in 2019,…

Being a parent is one of the joys in my life. I fiercely love my daughters and cannot imagine life without them. My youngest daughter, Emily, is 27 and teaches first grade. She’s the funniest person I know, and we have such a special relationship filled with laughter, prayer, and…

The emotional roller coaster that accompanies Sanfilippo syndrome can be bumpy at times, and I’ve been feeling the ups and downs more strongly lately. I’m speaking of my extremely volatile emotions when caring for my daughter Abby and accounting for her needs. There’s the ebb and flow of happiness…

“Are you ready?” I asked my husband as we stood on the steps outside of a massive, intimidating building. “As ready as I can be, I guess,” he replied. We nodded at each other and walked to the front door. It was time to attend the first high school…

Have you ever sat on a plane stuck on an airport runway for an extended period of time? In that scenario, there’s a delay of some sort, and you just have to sit there and wait it out. There’s nothing you can do about it. Maybe it affects your emotions,…