Orszula Family

Steven Orszula

Globoid Cell Leukodystrophy
(Krabbe Disease)

Oak Lawn, IL

Born: 12/01/59
Went to Heaven: 03/18/00

Jones Family

Tanner Jones

Leukoencephalopathy with Brainstem and Spinal Cord Involvement and Lactate Elevation (LBSL)

Fleming Island, FL

Born: 01/15/20

Hurst Family

Bobby Hurst

Pelizaeus Merzbacher Disease (X-linked spastic paraplegia)

Middleburg Heights, OH

Born: 09/12/93
Went to Heaven: 04/18/16

Hurst Family

Brian Hurst

Pelizaeus Merzbacher Disease (X-linked spastic paraplegia)

Middleburg Heights, OH

Born: 01/07/91

Frost Family

Joseph Arthur Frost

Adrenoleukodystrophy
(ALD)

Poestenkill, NY

Born: 11/27/02
Went to Heaven: 03/07/14

Website: www.joyfromjoseph.com

Feldt Family

Dawson Feldt

Globoid Cell Leukodystrophy
(Krabbe Disease)

Franklin, VA

Born: 07/16/19
Went to Heaven: 11/08/20

Emery Family

Dylan Emery

Globoid Cell Leukodystrophy
(Krabbe Disease)

Ninety Six, SC

Born: 11/05/17
Went to Heaven: 10/16/18

Menard Family

Elias Menard

Adrenoleukodystrophy
(ALD)

Jackson, ME

Born: 06/13/09
Went to Heaven: 04/09/19

Perez Family

Briar Rose Perez

Pelizaeus-Merzbacher-like Disease
(PMLD)

Charleston, SC

Born: 07/04/16

Grujicic Family

Nikola Grujicic

Globoid Cell Leukodystrophy
(Krabbe Disease)

Newport News, VA

Born: 03/15/18
Went to Heaven: 6/16/24