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.

Name: Patrik
From: Born in Hungary, living in Germany
Diagnosed: 2 years old

About: Patrik is a funny and friendly little boy who loves to play with his toy cars, buses and trucks. He sometimes wants to be a bus driver, other times an engineer developing bus and truck engines. He has big plans and his parents hope he can reach his goals.


Name: Edward
From: USA
Diagnosed: Initially diagnosed as a child in 1978, but LBSL was the official updated diagnosis in 2014.

About: Edward is a hard-working and determined person that is also very compassionate, empathetic and happy-go-lucky.  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.


Name: Alice
From: Brazil
Diagnosed: 4 years old

About: Alice Valentine lives in Brazil, she was diagnosed with LBSL at the age of 4 and today she is 7 years old. Alice is a very loving child. Alice loves to go to school and ride a horse.


Name: Dean
From: USA
Diagnosed: 1 year old

About: Dean is a bright blue eyed, little boy with a contagious smile who loves his sissy and playing with toys. He brings joy to everyone around him.  His family affectionately calls him “Buddy.” Dean’s parents were not given much hope at first, but through faith and perseverance they have seen him reach new milestones.