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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.

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…

I recently accepted a teaching position out of town, and am moving into a new apartment this week. As exciting as this is, I can’t help but be sad about leaving my family. Extra emotions come with being a Sanfilippo sibling, including the guilty feelings that accompany events like…

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,…

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’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…

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…

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…