The Albuquerque Family

Makayla, Krabbe Disease

The Anglin Family

Milo, Unspecified Leukodystrophy

The Arizmendi Family

Evelyn & Owen, Krabbe Disease

We have a long but beautiful story. All 3 of our children have been impacted by the terrible effects of Krabbe.

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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 Boutla/Laivera Family

Emmelia, 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 Brittain Family

The Burkholder Family

Jacob & Luke, Hypomyelinating Leukodystrophy

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 Clausen Family

Bryce, Krabbe Leukodystrophy

We’re the Clausen Family, Joel, Andrea, Levi, and our sweet Angel Bryce.

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The Cross Family

Joshua and Laura, Krabbe Leukodystrophy

The Cushman Family

Collin, Krabbe Leukodystrophy

We are Kevin, Judy, Collin, and Kendra. Collin was born on December 19, 2010. He was a content baby reaching all his milestones. At 8.5 months Collin started regressing.  We got the diagnosis of Krabbe Leukodystrophy when he was 13 months. Our life was a whirlwind in trying to find ways to help our son. He truly was our inspiration to keep fighting everyday. Collin lived 8 years and we were blessed to hold him in our arms that long. It has been 3.5 years since holding our boy, but you never forget the sweet innocence of a Krabbe child. Because  of Collin we are advocating to get Wisconsin to screen all newborns, but it has been a slow process.  Krabbe will forever be a part of our lives.

The De Lima Abreu Ramos Family

The Donnelly/Romano Family

Teagan, Metachromatic Leukodystrophy (MLD)

The Douglas/Arnett Family

Braxton & Oliver, Pelizaeus Merzbacher Disease (PMD)

The Dulay Family

Dyllan & Kristine, 4H Leukodystrophy

The Fahey Family

Sean, Alexander Disease

The Fausett Family

Hunter & Grayson, Aicardi-Goutieres Syndrome

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

Hunter's Hope Wall of Fame

The Garcia Family

Jackson, Krabbe Leukodystrophy

The Garcia Family

Luciana, Leigh Disease

Luciana was born on 2016, she is the third of four children. Although it was difficult to accept her Leigh Disease diagnosis, today,  after 7 years we are grateful for all the hearts she has touched as the living angel she is and still taking care of her with love and a smile on our faces.
Garcia del Razo Family
Guadalajara Mexico

The Gaston Family

Hailey, Unspecified Leukodystrophy

We are the Gaston Family. Hailey was diagnosed with an unspecified Leukodystrophy when she was 4. She’s had a lot of ups and downs. She had a g-tube placed when she was 4 and a pacemaker placed when she was 7. She started having seizures when she was 12 and hasn’t been able to ambulate independently since.

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The Glaudemans Family

Laura, Metachromatic Leukodystrophy (MLD)

We are Paul and Darlene Glaudemans from Baltimore, Maryland. We have been married for 38 years and have 3 children. Tim is 35 and married to Sarah and they had their first child in 2020, Laura is 32 and Emily is 31.

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The Goodin Family

Grace & Grant, Multiple Sulfatase Deficiency (MSD)

The Greene/Shell Family

Anthony & Dalton, Krabbe Leukodystrophy

We are Jeff and Dianna Greene from Millers Creek, NC. We are the Greene/Shell family. We have been married for 21 years. We are a blended family with Jeff having two daughters from a previous marriage and me having 5 children from a previous marriage plus we have a daughter together. I am Mom to Jodi, Anthony, Joshua, Ashley, Dakota and Dalton and stepmom to Selina and Nicole.

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The Grujicic Family

Nikola, Krabbe Disease

The Haines Family

Erik & Adam, Krabbe Disease

My name is Paul Haines and I live in a Maple Grove MN. This is our family’s experience with Krabbe disease.

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The Hammond Family

Loie, Metachromatic Leukodystrophy (MLD)

Loie was born June 26th, 2010 to Matt and Lauren Hammond and big brother Owen. Loie was originally diagnosed with Spastic Diplegia, a form of Cerebral Palsy back in March 2012

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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 Havlik Family

Reed, Vanishing White Matter Disease

The Higuera/Kovacs Family

Rainey & Zoli, Adrenoleukodystrophy (ALD)

The Hughes/Tucker Family

Myles Tucker, 4H Leukodystrophy

Hi! My name is Georgia, I’m a single mama to Myles – 3. We are from Wales, United Kingdom. Myles was diagnosed with 4H Leukodystrophy just before Christmas of 2021.

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The Huhn-Petersen Family

Jace, Krabbe Disease

The Kelly Family

Hunter, Krabbe Disease

Hunter’s Hope was established in 1997 by Pro Football Hall of Fame Member and former Buffalo Bills Quarterback, Jim Kelly and his wife Jill, after their infant son, Hunter (2/14/97–8/5/05) was diagnosed with Krabbe Disease, an inherited fatal nervous system disease. When the Kellys welcomed their only son, Hunter, into the world on February 14, 1997 — Valentine’s Day and Jim’s birthday — they knew he was destined for something extraordinary.

Through Hunter’s life many lives have been touched with the Light of Hope.  The Kelly’s greatest desire is to share the Hope that they have.

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 Malfara Family

Morgan, Aicardi-Goutieres Syndrome (AGS)

Morgan’s birth (late 1997) itself was uneventful, and he was born perfect in every way that new parents believe their child to be perfect — 10 fingers and 10 toes, a perfectly formed tiny body, and announcing his arrival with a healthy wail!

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The Marcucci Family

Madison, Rare Chromosome Deletion

The Martin Family

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.

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The McIntyre/Gallagher Family

Aoife, Vanishing White Matter Disease

The Measles Family

Scarlett, Krabbe Disease

The Mendizabal Family

Melinda, Unspecified Adult Onset Leukodystrophy

The Muhammad Family

Sanan, Canavan Disease

The Novak Family

William, Krabbe Disease

We are the The Novak Family – Daniel, Cassie, Jameson (6), Bryson (10 months), and William. We are from Bedford, Pennsylvania.
William was born July 29, 2018.  He was diagnosed with Krabbe Disease at 6 months old. After a 10 month battle, he passed away on December 18, 2019.

The Odedara Family

Sangna, Cerebrotendinous Xanthomatosis (CTX)

The O'Neal Family

Everly, Unspecified Leukodystrophy

The Owens Family

Austin, Adrenoleukodystrophy (ALD)

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 Rauner Family

Paul, Adrenomyeloneuropathy (AMN) & Kevin Adrenoleukodystrophy (ALD)


The Robinson Family

Rowdy, Oculodentodigital Dysplasia with Cerebral White Matter Abnormalities

The Robson Family

Dude, 4H Leukodystrophy

The Rodriguez Family

Elmer, Krabbe Disease


The Rojas Family

Brandon & Brian, Adrenoleukodystrophy (ALD)

We are the Rojas Family, Brandon and Brian were diagnosed with X-Linked Adrenoleukodystrophy in 2014 it was an unforgettable experience that changed our lives. Brandon was a perfect boy, he was very active, played soccer, baseball, basketball, love swimming and even did Zumba.

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The Rugari Family

Nicholas & Gina, Krabbe Disease

Hi!  I am Anne Rugari and I live on the west coast of Florida.  I have three children, Phil, Nick and Gina.  Phil is married and has a family of his own.  I am very blessed with my only grandchild, PJ, who calls me “Mimi”.

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The Scheibe Family

Josiah, H-ABC Leukodystrophy

The Schmiedel Family

Madeline, Unspecified Leukodystrophy

We are the Schmiedels from Texas. Maddy has an unspecified Hypomyelinating Leukodystrophy, but we my finally have an answer. Children’s Hospital of Philadelphia (CHOP) is researching the BLOC1S1 gene they believe is causing her disease. Four children with the same symptoms and with mutations on this gene were in a recent paper, so we’re excited to have a possible answer. Marilyn is a board member with the United Leukodystrophy Foundation (ULF) and dad and little brother are Maddy’s biggest fans. Outside of therapies and appointments, she loves riding horses, listening to Taylor Swift, and swimming in the ocean. This is our 3rd year with Hunter’s Hope and we have already met lifelong friends. We are so thankful for this community. 

The Sciera-Beutler Family

David, Alexander Disease


Hunter's Hope Wall of Fame

The Seeger Family

Aidan, 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

Melissa (Mom), Gene (Dad), Angel Parker (Age 7), Scarlett (Age 4) and River (5 months) here. We are from southern Maryland. Our first child, Parker was diagnosed at 4 months with Krabbe Leukodystrophy. His mutation was aggressive and he passed away on September 14, 2015 at the age of 10 months. We spend the first few years fighting for newborn screening and awareness in Maryland, and were able to get a law passed (Parker’s Law) to inform all new parents of additional supplemental screening tests at birth.  Our family has hosted several fundraiser events to support Hunters Hope and look to continue our sons legacy in the years to come.

The Shulzhenko Family

The Smith Family

Lily, Krabbe Leukodystrophy

We are the Smith family! Kathleen, Eli, Abby, and Lily. Lily was diagnosed at about 6 months and received a stem cell transplant 2 weeks after diagnosis. It was a rough 6 months but totally worth all the ICU visits because Lily is now 10 and amazes us every day!!

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The Spencer-Pittman Family

Stella, Unspecified Leukodystrophy

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)

Our MLD journey started in 1995 when our daughter, Lindy, was finally diagnosed with Juvenile Metachromatic Leukodystrophy after a 6-year diagnostic odyssey. Lindy was 14 when diagnosed. We tested her two younger sisters and found that her middle sister, Jclynn, was not affected but her youngest sister Darcee, who was 10 at the time, also had MLD.

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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


Webb Family

The Webb Family

Mabry Kate & Owen, Krabbe Disease

To tell the story of sweet Owen, we must first start with the story of his sister, Mabry Kate. Mabry Kate was born seemingly happy and healthy on March 13, 2014.

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The Wheeler/Coleman Family

Trea, Pelizaeus Merzbacher Disease (PMD)

We are the Wilsons from Oregon. David and I, Tammy, have been together for 22 years, married for 21. Our oldest is Melaney (21), Mason (19) Bryce (14) Angel Marshall (13), and Michael (11).

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The Wilson Family

Marshall and Michael, Krabbe Disease

We are the Wilsons from Oregon. David and I, Tammy, have been together for 22 years, married for 21. Our oldest is Melaney (21), Mason (19) Bryce (14) Angel Marshall (13), and Michael (11).

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The Winters Family

Aurelia, Aicardi-Goutieres Syndrome



The Zajdel Family

Jurek, Metachromatic Leukodystrophy (MLD)