Berent-Weisse Family

01.27.2026

Quincy is 11 years old and has a genetic condition called Angelman syndrome that robs her of normal development, making speech, movement and learning an every day and every minute challenge.

Quincy's only real friends are her sisters. She speaks with her eyes and connects through touch, but when she's pushed to the limit of frustration, and doesn't have the words to express herself, she may pull their hair. She tries to make friends at school or on a playground, starting with soft noises and giggles, often staring at them for a response or even reaching to them for that touch and connection. But kids often don't understand and lose patience, and so they walk away.

01.30.2026

For Quincy, it's the smallest, yet most magical, things in life that bring her immense joy. It's the magic of a bubble - the shine, the glimmer, the moisture, the uniqueness of each one - if she touches it, it pops, then more come. She only has a few words, but one of her first was "bubbles". There aren't many activities that she and her sisters can equally enjoy, as their interests are harder to align with hers as times goes on. But playing in the water with bubbles never gets old for any of them - seeing bubbles, touching bubbles, being surrounded by bubbles. 

That's what happiness looks like for Quincy, and in turn for her family. It's the magic of the small things that grounds them.

02.03.2026

Quincy's parents' biggest fear is that if she lives past their lifetimes, who will advocate for her like they do? They are her cheerleaders on the field day and night, every week and month of the year. They know no one else could, or in the case of her sisters, should have to give her that same level of support.

To the world, Quincy is often a smiling, happy girl. But what many don't see is what her family does to ensure that she's the happiest she can possibly be - a sacrifice of what might be defined as a typical life that they choose to give up for her. In many ways, the struggle is not really Quincy's - it's her mom's, her dad's, and her sisters'. 

There is beauty that comes with caring and protecting someone so deeply, but that beauty comes with a parent’s greatest fear of when that is no longer possible.

02.06.2026

Quincy's parents live with a perpetual sense of guilt. If not for Quincy, it's for her sisters. If not for her sisters, it's for Quincy. They briefly consider outings or vacations with just Quincy's sisters for an occasional sense of normalcy, but the thought of doing anything fun without her seems impossible and weighs too heavily on their hearts. If Quincy is at home with a sitter, they know she is loved and happy, but the guilt is just too much. So her mom grabs those short windows when Quincy is napping or occupied to take her other girls out to get their nails painted so their life can feel relatively normal for just one moment.