Louter Family

Lola Louter

Globoid Cell Leukodystrophy
(Krabbe Disease)

West Palm Beach, FL

Born: 2/20/16
Went to Heaven: 3/19/17

Bolt Family

Addie Grace Bolt

Globoid Cell Leukodystrophy
(Krabbe Disease)

Easley, SC

Born: 12/28/14
Went to Heaven: 12/17/15

Blackwell Family

Ezra Blackwell

Globoid Cell Leukodystrophy
(Krabbe Disease)

Ballwin, MO

Born: 10/8/16
Transplant

Searle Family

Delilah Karen Wade

Globoid Cell Leukodystrophy
(Krabbe Disease)

Tunbridge Wells, United Kingdom

Born: 11/2/15
Went to Heaven: 10/21/16

Landsman Family Child 2

Josh Landsman

Canavan Disease

Brooklyn, NY

Born: 7/16/17

Landsman Family Child 1

Benny Landsman

Canavan Disease

Brooklyn, NY

Born: 6/27/16

Morris Family

Zane Morris

Pelizaeus Merzbacher Disease (X-linked spastic paraplegia)

Fort Bragg, NC

Born: 8/21/13

Evchich Family Child 2

Matthew Evchich

Unspecified Leukodystrophy

Lockport, NY

Born: 6/18/14
Went to Heaven: 12/16/19

Evchich Family Child 1

Mason Evchich

Unspecified Leukodystrophy

Lockport, NY

Born: 5/28/13
Mason’s Mission Foundation Website

DeLaCruz Family

Abel DeLaCruz

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

Houston, TX

Born: 5/9/09