Columns

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…

You live with many fears when a family member is diagnosed with a terminal disease. However, there is a specific fear that comes with being the sibling: What if I move away from home and something happens to my sister? Sanfilippo syndrome, a rare, terminal disease known as…

Since moving out of my house and away from my sister, I’ve been more cognizant of making sure she knows I love her. It’s hard to know if she understands the “little things” I do to express that, but each time I go home, I make sure I get…

For a parent, the worst thought in the world is losing a child. The love a parent has for his or her child is unceasing. Bringing a human being into the world, then raising and loving them only to lose them is unfathomable. Yet, parents of children with terminal illnesses…

It has always been relatively easy to make new friends. I take kindness very seriously, and I try to be as friendly as humanly possible. The hard part isn’t striking up a conversation or finding things to talk about, but rather knowing when to bring up my sister, Abby.

I have an interesting relationship with my sister, Abby. Because she has special needs, our relationship has always been rocky. I often would become jealous of the extra attention she received, and it weighed on me for many years. When Abby was diagnosed with Sanfilippo syndrome, a rare…

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…

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.