About Me


Which three words would you use to describe yourself?

1st question of the Be You Collection

 

Kaylei McGarrett is 23 years old. She was 20 when her brother, Nathaniel, was diagnosed with Pleomorphic Liposarcoma. He had just turned 13 and unfortunately passed away in 2017.

Kaylei is Bubbly, Caring, and Dedicated.

 

Chloey Rudy is 13 years old and her sister had her first seizure when Chloey was four.

Chloey is Caring, Defensive, and Fun.

 

Matthew Moon is six years old and his brother, Jacob, was diagnosed with Sanfilippo Syndrome at age seven. Matthew was four years old.

Matthew is Funny, Smart, and Kind.

 

Ella Moon (sister to Matthew and Jacob)  is 11 years old and in 6th grade. She was nine when Jacob was diagnosed.

Ella is Funny, Sporty, and Kind.

 

Jan Ballbé is 16 years old and he was 14 when his sister was diagnosed with MSD.

 

Grey Chapin is 15 years old, a freshman in high school. Her sister Blair was diagnosed with Sanfilippo Syndrome when she was six. Grey was four at the time of diagnosis.

 

Nic Bouzakis is 15 years old and he was 10 when his brother, Greco, was diagnosed.

Nic is Caring, Tough, and Happy.

 

Next Question: What is your favorite hobby?


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When Super Sibs Meet

What happens when the siblings of kids with the same terminal illness meet? I can say from experience, it’s awesome. No matter your age or interests, you immediately become best friends.  At this year’s MPS Conference, I had the opportunity to meet several siblings. I didn’t get to… Read More

Image for With The New Year Comes Difficult Feelings

With The New Year Comes Difficult Feelings

Jan. 1 always brings up difficult feelings for me. Even before Sanfilippo syndrome entered our lives, New Year’s was a holiday for reflection — which isn’t necessarily an easy thing to process. Each year, thoughts about what the coming year has in store flood my mind. Read More

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