Other Awesome People
LBSL, also known as “Awesome Disease,” comes in different forms (infantile onset; juvenile onset; and adult onset). It knows no age or ethnic boundaries, and while rare, cases of LBSL have been reported in every corner of the globe. These are just a few of the faces of LBSL.
Meet Ellie
From: USA
Diagnosed: 3.5 years
When she isn’t acting as an advocate for LBSL patients, Ellie is a normal teenager who likes video games, hanging out with friends and spending time with her dog Sonny. Ellie is passionate about animals and hopes to one day work as a veterinarian.
Meet Tanner
From: USA
Diagnosed: 8 months
Tanner is a sweet boy whose smiles and giggles bring joy to everyone around him. Tanner likes to snuggle with his older brother and loves being outdoors.
Meet Sierra
From: USA
Diagnosed: Misdiagnosed at birth with Cerebral Palsy. Diagnosed with LBSL in 2007 at age 9
Sierra is an adult who has a pretty awesome power wheelchair, loves video games, music (especially Eminem), reading, helping with baking, and just having fun. Sierra was misdiagnosed with CP for many years until brain scans showed she was born with LBSL. Sierra is very hopeful for a cure.
Meet Edward
From: USA
Diagnosed: 1978, 2014
Edward is a hard-working and determined person that is also very compassionate, empathetic and happy-go-lucky. Initially diagnosed as a child in 1978, LBSL was the official updated diagnosis in 2014. His motto in life is, “Do the best you can with what you have, by putting forth your best effort; treat people with kindness, love and patience and you will be at peace with no regrets.” Edward is a retired attorney who enjoys spending time with family, friends and neighbors.
Meet Alice
From: Brazil
Diagnosed: 4 years
Alice lives in Brazil, she was diagnosed with LBSL at the age of 4. Alice is a very loving child who loves going to school and riding horses.
Meet Dean & Dalton
From: USA
Diagnosed: 1 year / 7 months
Dean and Dalton are brothers born three years and four months apart. Dean, affectionately known as “Dean-O” loves Country music and superheroes and is very caring toward his little brother, A.K.A. “Salty Dalty.” Dalton loves his big brother and sister and the word “no”. Their parents were not given much hope at first, but through faith and perseverance they have seen both boys reach new milestones.
Meet Hazel
From: USA
Diagnosed: 6 years
Hazel is a happy pre-teen who loves singing and dancing. Some of her favorite things are singing karaoke, coloring, drinking hot chocolate, and practicing her dance routines.
Meet Emilija
From: Lithuania
Diagnosed: 18 months
Emilija is a very smart, sweet, and sensitive girl. She loves music and singing. Working hard, so she could walk on her own and be independent in the future.