The Blackwell Family

Ezra, Krabbe Disease

Hello Leukodystrophy Family! We are Ryan, Karlita, and Ezra from St. Louis, Missouri. Ezra was born in October 2016 and was the first child to receive a positive newborn screening test after birth for Krabbe in the state of Missouri.

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The Blanchard Family

Jordan and Joelle, Cerebrotendinous Xanthomatosis (CTX)

It was in June of 2014 when we noticed something very wrong with our then 7-year-old daughter, Joelle. Home from school for the summer, it had become obvious she had started delegating many tasks to her ten-year-old brother, Jordan.

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The Bonacorsa Family

Sofia, Krabbe Disease

The Boye Family

Brittany, Metachromatic Leukodystrophy (MLD)

The Brackbill Family

Victoria, Krabbe Disease

We are Brennan and Lesa Brackbill, and we live in Hershey, Pennsylvania with our four-year-old identical twin boys, Isaiah and Caleb. We will celebrate twelve years of marriage in November.

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The Caruso Family

Anthony, Krabbe Disease

Anthony Peter Caruso was born on Thanksgiving Day, 11/28/1974. He was the perfect baby, always smiling, never fussy, and appeared completely normal. At 4 months old, Anthony was still not able to hold up his head.

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The Fahey Family

Sean, Alexander Disease

The Fedorak Family

Chloe & Scarlett, Krabbe Disease

The Feldt Family

Dawson, Krabbe Disease

We are Alex and Kasey Feldt from Franklin, Virginia. We are high school sweethearts and we have been married for 4 years now. On July 16, 2019, Kasey gave birth to a perfect baby boy, Dawson Luke Feldt.

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The Foster Family

Lennon, Krabbe Disease

The Garcia Family

Jackson, Krabbe Disease

The Gaston Family

Hailey, Unspecified Leukodystrophy

The Greene/Shell Family

Anthony & Dalton, Krabbe Disease

The Grujicic Family

Nikola, Krabbe Disease

The Hammonds Family

Liam, Krabbe Disease

We are Scott and Terry Hammonds from the Chicagoland area.  We just celebrated our 23rd wedding anniversary this past July, 2022.  Our son Liam was born on September 4, 2000.  The first child born to both of us.  He passed all of our states Newborn Screening tests, he completed us as a family and we came home with dreams and ideas for our lives ahead of us.

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The Harres Family

Adalyn, Krabbe Disease

The Higuera Family

Rainey & Zoli, Adrenoleukodystrophy (ALD)

The Lebow Family

Mila, Krabbe Disease

The Leeker Family

Trevor, Krabbe Disease

We are Bill and Michelle Leeker from Wellsville, Kansas.  We have been married for 28 years and have three amazing children.  Zac is 27 (works for the health department) and blessed us with a wonderful daughter-in-law Braxton. (who is a nurse).

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The Limbach Family

Chelsey, Adult Onset Autosomal Dominant Leukodystrophy (ADLD)

The May Family

Dylan, Krabbe Disease

We are Phil and Amy May. We have been married 29 years and we have 4 children. Jackson is 24, Conner is 21, Dylan is in heaven (and would be 18 in earthly years) and Sophie is 15. We had 3 wonderful boys, as of October 4, 2004, when our world came crashing down. That day, Dylan was diagnosed with Krabbe Disease, at 8 ½ months old.

The Mendizabal Family

Melinda, Unspecified Adult Onset Leukodystrophy

The Muhammad Family

Sanan, Canavan Disease

The Pflaum Family

Marshall, Hikeshi-associated Hypomyelinating Leukodystrophy

Hello! We are Brian, Jodie, and Marshall from Chicago, Illinois. Marshall was born in March 2020. By the time he was nine months old it was apparent that he was not developing normally.
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The Phillips Family

Nicholas, Adrenoleukodystrophy (ALD)

Hello.  We are the Phillips’ family-Darryl, Valerie, Abby and Nick(on the book cover).  Nick is our precious son and Abby’s brother.  He was diagnosed with Adrenoleukodystrophy when he was 6 years old back in the year 2000. 

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The Rojas Family

Brandon & Brian, Adrenoleukodystrophy (ALD)

The Sereno Family

Salvatore & Giovanni, Metachromatic Leukodystrophy (MLD)

Hi. We are Carmelo (Mel) and Lina Sereno. We live in New Jersey with our two sons Salvatore (19) and Giovanni (13). Our sons were diagnosed with Metachromatic Leukodystrophy Disease (MLD). Salvatore was first diagnosed in October of 2009.

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The Shilling/Anderson Family

Matthew, Krabbe Disease

The Shoemaker Family

Parker, Krabbe Disease

The Spencer-Witczak Family

Kenan, Krabbe Disease

A beautiful seven years: Kenan Spencer Witczak, early infantile Krabbe disease, February 5, 2011 – May 312018.

The Stewart Family

Eric, Cerebrotendinous Xanthomatosis (CTX)

Eric has CTX, and I am Sue, his mother and legal guardian. Eric is severely affected by his CTX. He is non-verbal and functions more or less like a three-year-old with some skills that are higher than those of a three-year-old and some that are lower than those of a three-year-old. He is also considered to have autism and OCD.

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The Suhr Family

Darcee & Lindy, Metachromatic Leukodystrophy (MLD)

The Suppan Family

David & Sean, Adrenoleukodystrophy (ALD)

The Wagner Family

Emily Rose, Hypomyelination of the Brainstem with Spinal cord involvement and Leg spasticity (HBSL), VACTERL Syndrome

 

The Zajdel Family

Jurek, Metachromatic Leukodystrophy (MLD)