Wall of Fame

Johnson Family

Anna Rose Johnson

Globoid Cell Leukodystrophy
(Krabbe Disease)

Bracknell, UK

Born: 6/10/17
Went to Heaven: 10/28/18

Petersen Family

Jace Petersen

Globoid Cell Leukodystrophy
(Krabbe Disease)

Portland, MI

Born: 12/16/13
Transplant

Bohmont Family

Emmett Bohmont

Globoid Cell Leukodystrophy
(Krabbe Disease)

Harrisburg, NC

Born: 11/8/17
Went to Heaven: 9/27/18

Johnson Family

Ean Johnson

Aicardi-Goutieres Syndrome
(AGS)

Statesville, NC

Born: 6/6/17

Zoe Tristan

Tristan Family

Zoe Monroe Tristan

Vanishing White Matter Disease
(Childhood ataxia with diffuse central nervous system hypomyelination, or CACH)

Bakersfield, CA

Born: 7/29/13
Went to Heaven: 2/15/18

Gourni Family

Katerina-Maria Gourni

Globoid Cell Leukodystrophy
(Krabbe Disease)

Greece

Born: 6/20/17
Went to Heaven: 3/29/18

Hazard Family

Sunny Hazard

Globoid Cell Leukodystrophy
(Krabbe Disease)

Bayside, CA

Born: 10/2/17
Went to Heaven: 9/29/18

 

Martinez-Galindo Family

Mariah Galindo

Globoid Cell Leukodystrophy
(Krabbe Disease)

La Pryor, TX

Born: 5/22/11
Transplant

Martinez-Galindo Family

Marcus Galindo

Globoid Cell Leukodystrophy
(Krabbe Disease)

La Pryor, TX

Born: 5/18/09
Transplant

Phillipy Family

Massimo Phillipy

Adrenoleukodystrophy
(ALD)

Cliffside Park, NJ

Born: 7/31/01

Massimo’s CaringBridge Website