Families affected by a Leukodystrophy share their stories every day on social media. Their voices are unique, informative, and important and give a glimpse into the reality of living with a Leukodystrophy.


Abner Family

Katelynn Abner

Metachromatic Leukodystrophy (MLD)

To learn more about the Abner Family and Kristal’s Podcast Episode, click here.

Click here to learn more

Absher Family

Baby Emmalynn

Krabbe Disease (Transplant)

Click here to learn more

Agarand Family

Noah’s Gene Therapy Treatment Journey

Adrenoleukodystrophy (ALD) (Transplant)

Click here to learn more

Allen/McAdams Family

Julie Allen and Tyler McAdams

Metachromatic Leukodystrophy (MLD) (Transplant)

To learn more about the Allen/McAdams Family and Julie’s Podcast Episode, click here.

Amanda Anastasia

Believe Art by Amanda

Aicardi-Goutieres Syndrome (AGS)

Click here to learn more

Belyew Family

Hunter’s Journey

Vanishing White Matter Disease (VWMD)

Click here to learn more

Blackwell Family

Ezra Blackwell

Krabbe Disease (Transplant)

To learn more about the Blackwell Family and Karlita’s Podcast Episode, click here.

Blanchard Family

Jace and Joelle Blanchard

Cerebrotendinous Xanthomatosis (CTX)

To learn more about the Blanchard Family and Bobbi’s Podcast Episode, click here.

Click here to learn more

Boden/Miller Family

Team Jaxtien

Metachromatic Leukodystrophy (MLD) (Transplant)

Click here to learn more

Bourassa Family

Nicholas and Joshua Bourassa

Krabbe Disease (Transplant – Joshua)

To learn more about the Bourassa Family and Becky’s Podcast Episode, click here.

Click here to learn more

Brackbill Family

Tori Brackbill

Krabbe Disease

To learn more about the Brackbill Family and Lesa’s Podcast Episode, click here.

Branch Family

Sweet William’s Way with Krabbe

Krabbe Disease (Transplant)

Click here to learn more

Broadbent Family

Extraordinary Emma Grace

Chaserr IncRNA Leukoencephalopathy

Click here to learn more

Brooks Family

Eden Brooks

Metachromatic Leukodystrophy (MLD)

To learn more about the Brooks Family and Beth’s Podcast Episode, click here.

Buck Family

Sam vs. VWM

Vanishing White Matter Disease (VWMD)

Click here to learn more

Burroughs Family

Nico’s Warriors

Krabbe Disease (Transplant)

Click here to learn more

Casey Family

Caring for Caroline

Metachromatic Leukodystrophy (MLD)

Click here to learn more

Christie Family

Killian’s Journey

Metachromatic Leukodystrophy (MLD)

Click here to learn more

Clausen Family

Bryces Battle

Krabbe Disease

 

Click here to learn more

Drinkwater Family

Ronan Roars

Metachromatic Leukodystrophy (MLD)

Click here to learn more

Ellis Family

Miracle for Cove

Krabbe Disease

Click here to learn more

Feldt Family

Dawson Feldt

Krabbe Disease

To learn more about the Feldt Family and Kasey’s Podcast Episode, click here.

Finn Family

Conner’s Crusade

Adrenoleukodystrophy (ALD)

Click here to learn more

Fitzgerald Family

Hailey’s Dreams

Metachromatic Leukodystrophy (MLD)

Click here to learn more

Gaston Family

Hugs for Hailey

Unspecified Leukodystrophy

Click here to learn more

Goodin Family

Grant Us Grace

Multiple Sulfatase Deficiency (MSD)

To learn more about the Goodin Family and Tonya’s Podcast Episode, click here.

Click here to learn more

Greene/Shell Family

Dalton and Anthony Shell

Krabbe Disease

To learn more about the Greene/Shell Family and Dianna’s Podcast Episode, click here.

Grujicic Family

Nikola Strong

Krabbe Disease

Click here to learn more

Havlik Family

Team Reed

Vanishing White Matter Disease (VWMD)

Click here to learn more

Heilman Family

Emilee’s Journey

Alexander Disease

Click here to learn more

Hoffman Family

A Rare Ruby

Hypomyelination with Atrophy of Basal Ganglia and Cerebellum (H-ABC)

Click here to learn more

Hough Family

Aidan Hough

GM1 Gangliosidosis

Advocating for Aidan

Click here to learn more

Hughes/Tucker Family

Myles Tucker

4H Leukodystrophy

Myles is 4 years old and lives in the UK with his mom Georgia. Myles is affected by the POLR3B mutation of 4H Leukodystrophy.

Read more

Huitema Family

Cade’s Journey

Krabbe Disease

Click here to learn more

Kale/Angiuli Family

Sia Strong

LEUDEN Syndrome

Click here to learn more

Kirbo Family

Cloud’s Krabbe Journey

Krabbe Disease (Transplant)

Click here to learn more

Law Family

A Cure for Violet

GM1 Gangliosidosis

Click here to learn more

Lebow Family

Praying Miracle for Mila

Krabbe Disease

Click here to learn more

Ledbetter Family

Grayson’s Ladder

Alexander Disease

Click here to learn more

Levasheff Family

Judson Levasheff

Krabbe Disease

To learn more about the Levasheff Family and Christina’s Podcast Episode, click here.

Marcucci Family

Madison Marcucci

Rare Chromosome Deletion

To learn more about the Marcucci Family and Kelly’s Podcast Episode, click here.

Martinez/Galindo Family

A Miracle for Marcus and Mariah

Krabbe Disease (Transplant)

Click here to learn more

May Family

Dylan May

Krabbe Disease

To learn more about the May Family and Amy’s Podcast Episode, click here.

McKee Family

A Miracle for Ella Rose

Vanishing White Matter Disease (VWMD)

Click here to learn more

McVann Family

One Tough Cookie: Olivia’s MLD Journey

Metachromatic Leukodystrophy (MLD) (Transplant)

Click here to learn more

Measles Family

Scarlett Measles

Krabbe Disease (Transplant)

To learn more about Scarlett and her Podcast Episode, click here.

Mercer Family

Courage for Kiki

Unspecified Leukodystrophy

Click here to learn more

Morse Family

Grayson’s Smile

Krabbe Disease (Transplant)

Click here to learn more

Obryan Family

Hope for Makenzie

Metachromatic Leukodystrophy (MLD) (Transplant)

Click here to learn more

Phillips Family

Nick Phillips

Adrenoleukodystrophy (ALD)

To learn more about the Phillips Family and Valerie’s Podcast Episode, click here.

Click here to learn more

Priest Family

Priest Family Strong

Metachromatic Leukodystrophy (Transplant – Bryce & Izaiah)

Click here to learn more

Purschke Family

Knockout ALD

Adrenoleukodystrophy (ALD) (Transplant)

Visit their website here.

Click here to learn more

Rasberry Family

Addi’s Fight

Metachromatic Leukodystrophy (MLD)

Click here to learn more

Rasberry Family

A Miracle for Ollie

Metachromatic Leukodystrophy (MLD) (Gene Therapy)

Click here to learn more

Reininger Family

Walk with Austin

Aicardi-Goutieres Syndrome (AGS)

Click here to learn more

Robinson Family

Rowdy’s Rare ODDDyseey

Oculodentodigital Dysplasia with cerebral white matter abnormalities (ODDD)

Click here to learn more

Rojas Family

Battling with Brandon

Adrenoleukodystrophy (ALD)

Click here to learn more

Rose Family

Edison Rose Fighting VWM

Vanishing White Matter Disease (VWMD)

Click here to learn more

Rosemier-Bentley Family

Hope for Riley

Canavan Disease

Click here to learn more

Rowland Family

Hope4Aubrie

Mitochondrial Disease-Leukoencephalopathy with ovarian failure (LKENP)

Click here to learn more

Schmitt Family

Jimmy Schmitt

Adrenoleukodystrophy (ALD)

To learn more about the Schmitt Family and Sheila’s Podcast Episode, click here.

Schonbachler Family

Asher’s Army

4H Leukodystrophy

Click here to learn more

Schroeder Family

Hope for Blaine

Krabbe Disease

Click here to learn more

Sciera-Beutler/Stocki Family

Team David

Alexander Disease

Click here to learn more

Sereno Family

Sereno Warriors

Metachromatic Leukodystrophy (MLD) (Transplant)

To learn more about the Sereno Family and Lina’s Podcast Episode, click here.

Click here to find out more

Shaw Family

Nala & Teddi’s MLD Journey

Metachromatic Leukodystrophy (MLD) (Teddi – Gene Therapy)

Click here to find out more

Shullanberger Family

Bryleigh Shullanberger

Metachromatic Leukodystrophy (MLD)

To learn more about the Shullanberger Family and Kaprice’s Podcast Episode, click here.

Smith Family

Love for Lily

Krabbe Disease (Transplant)

Click here to learn more

Staruk Family

Team Everett

Pelizaeus Merzbacher Disease (PMD) (Transplant)

Click here to learn more

Wagner Family

Emily Rose’s Journey

HBSL – Hypomyelination of the Brainstem with Spinal cord involvement and Leg spasticity

Click here to learn more

Wallace Family

Jackson Wallace

Krabbe Disease

To learn more about the Wallace Family and Jenna’s Podcast Episode, click here.

Ward Family

Gemma’s Krabbe Journey

Krabbe Disease

Click here to learn more

Webb Family

Miracles for Mabry Kate and Owen

Krabbe Disease (Transplant – Owen)

Webpage – TeamMKO

To learn more about the Webb Family and Christin & Kyle’s Podcast Episode, click here.

Click here to learn more

Werner/Oagles Family

DJ Strong Krabbe Fighter

Krabbe Disease (Transplant)

Click here to learn more

White Family

Moving with Meris – Our Journey with Alexander Disease

Alexander Disease

Click here to learn more

Wilson Family

Marshall and Michael Wilson

Krabbe Disease (Transplant – Michael)

To learn more about the Wilson Family and Tammy’s Podcast Episode, click here.