The Abner Family

Chris, Kristal, Wyatt, Katelynn, Avalynn

Chris & I were married on 03/04/05 and we lived in San Diego CA. Chris had started boot camp for the Marine Corps shortly after we started dating. We had been together for boot camp, training schools, combat deployment, and training operations. We had our first baby while Chris was deployed on his 4th deployment.

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Click here to listen to Kristal and Wyatt's Podcast Episode

The Arizmendi Family

Vince, Heather, Evelyn. Molly, and Owen

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 Austin/Barron Family

Carolyn, Christine, Alissa, and Elijah

Krabbe

The Bazar Family

Corey, Reesa, Levi, Liam, Anniston, Maeve, and Miley

We are Corey and Reesa Bazar from Lafayette, Louisiana. We have been married 17 years and have 3 children. Levi is 13, Liam is 11, and our youngest daughter is Anniston who is forever five, but who would now be 10 years old.

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The Blanchard Family

Tim, Bobbi, Jace, Jordan, and Joelle

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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Click here to listen to Bobbi's Podcast Episode

The Bonacorsa Family

Mike, Kelly, and Sofia

Krabbe

Click here to learn more about the Bonacorsa Family

The Bourassa Family

Nicholas, Rebecca, Nicholas, Joshua, Stanley, Matthew, and Delaney

Krabbe

Click here to listen to Rebecca's Podcast Episode

The Brooks Family

Beth, Eden, and Estela

MLD

Click here to listen to Beth's Podcast Episode

The Caruso/Esquerdo Family

Grace, Anthony, Christine, and Anthony Peter

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 Castaneda Family

Tony, Anna, Gracie, and Zeke

Gracelyn, also known as Gracie, received a diagnosis of hypomyelinating leukodystrophy, 4, in March 2023. She’s the youngest among her seven siblings, one sister, and six brothers. Initially, her parents noticed her foot turning inward while walking at age three, attributing it to the family’s history of Charcot Marie Tooth Disease (CMT), which five of her older siblings have. However, as she grew older, more symptoms emerged, including a severe tremor, both feet turning inward, and cognitive delays. At six, an MRI revealed white matter changes, prompting genetic testing that confirmed the leukodystrophy diagnosis. 

Gracie’s journey has been a profound teacher in our lives, showing us the true importance of living and loving. We are immensely grateful to have her in our family, a precious blessing from Jesus. And pray every day for a miracle cure to save her life!

The Coleman/Wheeler Family

Trea, Sr., Ciera, Trea, Jr., Havyn, Korbyn, Aerilyn and Jalyn

My name is Ciera Wheeler. I’m a mother of five amazing kids one being my heavenly superhero. I got pregnant in 2019 on my fifth and final Baby making his grand entrance on March 16, 2020 just 14 days before he came. my mom, the kids Nana she passed suddenly the night march 2, 2020 after my little man was born on March 16 I knew the moment I saw him he was so special not only did the good Lord take my mother right before he gave me my special angel.

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The Cushman Family

Kevin, Judy, Collin, & Kendra

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.

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The Dion Family

Bernard, Yannick, & Sandrine

Krabbe

The Feldt Family

Alex, Kasey, Dawson, and Lukas

On July 16, 2019, Kasey gave birth to a perfect baby boy, Dawson Luke Feldt.

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Click here to listen to Kasey's Podcast Episode

The Glaudemans Family

Paul, Darlene, and Laura

We are Paul and Darlene Glaudemans from Baltimore, Maryland. We are celebrating 41 years of marriage this July!  We have 3 children, Tim, Laura and Emily and we are proud grandparents of Maeve and Grant.

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The Greene/Shell Family

Jeff, Dianna, Anthony, Dalton, Ashley, Dakota and Bentley

We are Jeff and Dianna Greene from Millers Creek, NC. We are the Greene/Shell family. We have been married for 22 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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Click here to listen to Dianna's Podcast Episode

The Hammonds Family

Scott, Terry, and Liam

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 Hoffman Family

Brett, Lex, Sam, and Liam

Brett and I got married July 9th, 2022. We are from the Columbus Ohio area. Brett’s daughter Sam is 8, and Liam is currently 1. This will be our second symposium and we are so excited!

The Kelly Family

Jim, Jill, Hunter, Erin, Parker, and Camryn

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 Levasheff Family

Drake, Christina, Jessie, and Judson

We are the Levasheff Family—Drake, Christina, Judson, & Jessie (almost 18!). It is through the life of our beloved Jud that we are connected to all of you. Judson was a vibrant, healthy, bright two-year-old boy when his body suddenly began to deteriorate due to Krabbe Leukodystrophy. Within a matter of 5 months, Judson became completely blind, paralyzed and mute; he passed away on November 7, 2007, just before turning three. We currently reside in Orange County, CA but look forward to being reunited with our Jud Bud when we are finally home with our Lord for eternity.

Click here to listen to Christina's Podcast Episode

The Malfara Family

Kristen and Morgan

When Morgan was 10 weeks old, he started to demonstrate symptoms of colic, and our doctor simply suggested different holistic remedies we could try to alleviate his discomfort. However, as time went on his pain got worse, his round-the-clock screaming episodes escalated, and he failed to meet his 4-month developmental milestones. Morgan was evaluated by a pediatric gastroenterologist, and diagnosed with severe Reflux. We began a regimen of medications that seemed to help, however, by 6 months of age when Morgan had still not met his milestones, and he was still suffering and screaming 24/7, we became worried that there could be something very wrong. It was at this time that Morgan began to have episodes of eye fluttering, and his pediatrician was finally concerned! We took him to be evaluated by a pediatric neurologist. This doctor was concerned about the small size of Morgan’s head, and his rapid eye movements, and ordered an EEG and MRI to be done.

Our entire world came crashing down around us when we received the results of these tests!

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The McIntyre/Gallagher Family

Margaret, Aoife, and Fionn

Vanishing White Matter Disease

The Moore Family

Ferrell, Diana, and Regann

My daughter Regann Moore was born on 1/21/18. She’s now 6 years old. I got a phone  call from St Louis Children’s Hospital about the devastating news that my daughter Regann’s newborn screening results showed that she has Krabbe Leukodystrophy.  I was told to bring my daughter ASAP to the hospital.
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The Myers Family

Aaron, Krystle, Kayden, Amelia & Emerson

We are the Myers family. Aaron, Krystle, Kayden, and Amelia. We live in a suburb outside of Chicago, near Rockford IL.

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The Phillips Family

Darryl, Valerie, Abby, & Nicholas

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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Click here to listen to Valerie's Podcast Episode

The Richter Family

Kent & Donna

Donna has CTX. All of the issues did not add up to a diagnosis until…her neurologist could not figure it out and she said, “I know a smart man at Shands Teaching Hospital in Gainesville. I will you get an appointment.”

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The Rodriguez Family

Ana & Elmer

Krabbe

The Rojas Family

Paul, Liliana, Isabel, Brandon & Brian

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

Anne, Nicholas & Gina

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”.

Nick and Gina were born with Krabbe disease. Nick was born in 1986 and passed away in 1987 at a year old.  Gina was born in 1999, diagnosed as a newborn and underwent an umbilical cord blood transplant at just three weeks of age. Gina was the fourth newborn in the world to receive a transplant for Krabbe disease.  She received her “new life” cells at just 5 weeks old and was one of the pioneers who set the course for future patients born with Krabbe disease to receive a “hopeful” treatment to stabilize disease progression.

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The Schmiedel Family

James, Marilyn, James, and Madeline (Maddy)

We are the Schmiedels from Texas. Maddy has a recently identified Leukodystrophy called BLOCS1 Hypomyelinating Leukodystrophy. Children’s Hospital of Philadelphia (CHOP) is researching the BLOC1S1 gene they believe is causing her disease. We’re excited to finally have an 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 5th year with Hunter’s Hope and we have already met lifelong friends. We are so thankful for this community. 

The Schmitt Family

Mike, Sheila, Steven, Vanessa, and Jimmy

We are the Schmitt’s from Buffalo, NY. Mike, Sheila and Steven. Our hero Jimmy went to heaven in 2013 at 23 years old after battling ALD and its complications for 15 years. Jim was a happy, smart active 8 year old who loved baseball, swimming, puzzles, playing the piano and hanging out with his brother.

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Click here to listen to Sheila's Podcast Episode

The Schroeder Family

Jeremy, Amanda, Brooklyn, Tegan, and Blaine

Krabbe

The Seeger Family

Elisa, Aidan, and Sienna

ALD

The Sereno Family

Mel, Lina, Salvatore, and Giovanni

Hi. We are Carmelo (Mel) and Lina Sereno. We live in New Jersey with our two sons Salvatore (21) and Giovanni (15). Our sons were diagnosed with Metachromatic Leukodystrophy Disease (MLD). Salvatore was first diagnosed in October of 2009.

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Click here to listen to Lina's Podcast Episode

The Sheppard Family

Natalie & Remy

Remy was finally diagnosed last August after undergoing full genome mapping when no other testing could provide any answers to us regarding why she had such severe global delays. She will be three in July, and is still nonverbal and has limited mobility due to muscle weakness and tremors, but is still the happiest child I know, and extremely social!

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The Shilling/Anderson Family

Bill, Dawn, and Matthew/Taylor, Marissa, Audrey, & Callum

Krabbe

The Shullanberger Family

Corbin, Kaprice, Brixton, and Bryleigh

Born November 1, 2010, Bryleigh Shullanberger was born a happy and healthy baby girl. Adored by her parents and her big brother, Brixton, she was known for her beauty, the big bows in her hair and her love for Alvin and the Chipmunks! As Bryleigh neared her 2nd birthday and still wasn’t walking, Kaprice & Corbin Shullanberger (Bryleigh’s parents), began working with doctors to determine what might be the cause of the delay. After many months of medical appointments, tests, scans, and even major surgery, a diagnosis of Metachromatic Luekodystrophy (MLD) was made.

Click here to learn more and listen to Kaprice's Podcast Episode

The Smith Family

Kathleen, Eli, Abby, and Lily

Eli (18), Abby (15) and Lily (12).  Lily started regressing in symptoms and was diagnosed with Krabbe disease at 5 1/2 months old.  She was able to receive a stem cell transplant at 6 months old at UPMC.  Lily had Covid in 2021 and was on a ventilator for 40 days and needed a tracheostomy to help her recover.  We have opted to keep it as she has been healthier with less pneumonia and much easier breathing at night.  Lily uses an eye gaze device and is reading books with her teacher. Lily enjoys spending time with her family, making crafts, reading books, going for walks, camping in her camper and watching her shows on her iPad. 

The Webb Family

Kyle, Christin, Mabry Kate, Owen, & Sonnie

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. She was cooing, smiling, and interacting like most babies do until she was almost three months of age. From our initial feeling that something wasn’t quite right until her diagnosis three months later, Mabry Kate suffered some brutal symptoms that didn’t seem to fit together.

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Click here to listen to Kyle and Christin's Podcast Episode

The Wilson Family

David, Tammy, Melaney, Mason, Bryce, Marshall, and Michael

We are the Wilsons from Oregon. David and I, Tammy, have been together for 24 years, married for 23. Our oldest is Melaney (23), Mason (21) Bryce (16) Angel Marshall (15), and Michael (13).

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Click here to listen to Tammy's Podcast Episode