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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…