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.

Read more

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

The Allen/McAdams Family

Julie Allen and Tyler McAdams

Tyler and I live in the mountains of New Mexico. He was diagnosed with Metachromatic Leukodystrophy in 2008. He was 4. Today he is 19 years old. 

This will be our first trip to the Family Symposium.  Looking forward to meeting other affected families.

Click here to listen to Julie's Podcast Episode

The Andrade Family

Jose, Zulia, Zoe, Joziah, and Zuley

We are the Andrade Family, Ramon, Zulia, Zoe (12), Joziah (9) and Zuley (16 months). Zoe has never had a healthy issue before. She is a happy and very strong girl. On march of 2022 we notice that she wasn’t using her left hand as much.

Read more

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.

Read more

The Austin/Barron Family

Carolyn, Alissa, and Elijah


The Bell Family

Kyle, Josie, Jadie, Dezie, Brogun, and Gabbie

Jadie Jo Bell and her family live in Nephi Utah, where Jadie is a very loved little girl with lots of friends and Family that love her!

Read more

The Blackwell Family

Ryan, Karlita, and Ezra

Hi there! Our family of 3 (plus Ezra’s 2 dogs!) are from Missouri. Ryan is a Director of Compensation and Karlita works part-time for a local Non-Profit for children with neurological conditions.

Read more

Click here to listen to Karlita's Podcast Episode

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.

Read more

Click here to listen to Bobbi's Podcast Episode

The Bonacorsa Family

Mike, Kelly, & Sofia


Click here to learn more about the Bonacorsa Family

The Bourassa Family

Nick, Rebecca, Joshua, Stanley, Matthew, Delaney, & Ava


The Brackbill Family

Brennan, Lesa, Tori, Isaiah, and Caleb

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

Read more

Click here to listen to Lesa's Podcast Episode

The Brooks Family

Beth, Eden, and Estela


Click here to listen to Beth's Podcast Episode

The Butterfield Family

Weldon, Kayla, and Taiten

We are Weldon and Kayla Butterfield. We currently live in Eagle Mountain, Utah with our two dogs. We had Taiten Wayne on December 17, 2019. He was diagnosed with Krabbe disease on July 15, 2020, and passed away on March 14, 2021. Although we only had him for a short time we treasured every moment and we will love him forever

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.

Read more

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.

Read more

The Feldt Family

Alex, Kasey, Dawson, and Lukas

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

Read more

Click here to listen to Kasey's Podcast Episode

The Garcia Family

Raymond, Alicia, Ailene, Breanna, and Alaiyah

The Gidley Family

Steve, Christine, Alexis, Nicole, and Bronston

The Glaudemans Family

Paul, Darlene, and Laura

We are Paul and Darlene Glaudemans from Baltimore, Maryland. We are celebrating 40 years of marriage this July!  We have 3 children, Tim, Laura and Emily and we are proud grandparents of Maeve and Grant.

Read more

The Greene/Shell Family

Jeff, Dianna, Anthony, Dalton, Dakota, Ashley, 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.

Read more

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.

Read more

The Hoffman Family

Brett, Alexandra (Lex), Sam, and Liam

Brett and I got married July 9th, 2022. We are from the Columbus Ohio area. Brett’s daughter Sam is 7, and Liam is currently 6 months. This will be our first symposium and we are so excited!
Read more

The Jones Family

Brad, Mikaila, Lana, Sterling, Quincy, and Tanner

On January 15, 2020, our sweet Tanner was born at home. His birth was a true foreshadowing of his personality. Sweet, calm, quiet. We had no prior knowledge of his diagnosis before birth so we weren’t overly concerned about how often he kept his eyes closed or how easy it was for him to sleep in a loud room.

Read more

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 Leeker Family

Bill, Michelle, Hope, Colton, Zac, Braxton, and Trevor

We are the Leeker Family from Kansas. We have added to our family again this year with a marriage. We (Bill and Michelle) have worked years to increase newborn screening in our state since our middle son Trevor was born in 1999.  Our oldest son Zac (wife Braxton) works for the state newborn screening now. Our youngest, Hope (husband Colton), will be finishing her last year in college for Health Studies. We continue to push our state to add Krabbe Disease to the screening panel.

The Levasheff Family

Drake, Christina, Jessie, and Judson

We are the Levasheff Family—Drake, Christina, Judson, & Jessie (16). 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 Main Family

Kyle, Jacquelyn, Avery, Jensen, McCoy, and Jase


The Malfara Family

Kristen and Morgan

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!

Read more

The Marcucci/Bielak Family

Andrew, Kelly, and Madison

Click here to listen to Kelly's Podcast Episode

The May Family

Phil, Amy, Jackson, Conner, Sophie, and Dylan

We are Phil and Amy May. We have been married 30 years and we have 4 children. Jackson is 25, Conner is 22, Dylan is in heaven (and would be 19 in earthly years) and Sophie is 16. 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.

Read more

Click here to listen to Amy's Podcast Episode

The McIntyre/Gallagher Family

Margaret, Aoife, and Fionn

The Myers Family

Aaron, Krystle, Amelia, Kayden, and Emerson

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

Read more

The Penney Family

Cade, Chelsea, Bridger, Braylee, and Brecken

When my husband and I first laid our eyes on our third son after he was born, we were speechless; he was beautiful in every way. On the outside, he looked perfect and as healthy as could be. Little did we know, he was born to a very broken body.

Read more

The Phillips Family

Darryl, Valerie, Abby, and Nick

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. 

Read more

Click here to listen to Valerie's Podcast Episode

The Rauner Family

Bob, Yvonne, Kevin, and Paul


The Richter Family

Kent and Donna

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

Read more

The Rojas Family

Paul, Liliana, Brandon, and 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.

Read more

The Schmiedel Family

James, Marilyn, James, and Madeline

We are the Schmiedels from Texas. Maddy has a recently identified 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 4th 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.

Read more

Click here to listen to Sheila's Podcast Episode

The Schroeder Family

Jeremy, Amanda, Brooklyn, Tegan, and Blaine

Hunter's Hope Wall of Fame

The Seeger Family

Elisa, Sienna, and Aidan

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 (20) and Giovanni (14). Our sons were diagnosed with Metachromatic Leukodystrophy Disease (MLD). Salvatore was first diagnosed in October of 2009.

Read more

Click here to listen to Lina's Podcast Episode

The Shilling/Anderson Family

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

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 (14) and Lily (11).  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 and 2021, 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.  This summer Lily is working on writing her very own book. 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.  Lily is also scheduled to receive spinal fusion in August, please send lots of prayers as this is a big surgery!!

The Wagner Family

Corey, Sunshine,Teagan, and Emily

Our Emily Rose has one of the rarest forms of leukodystrophy, a mutation of the DARS-2 gene. At the time of diagnosis, in 2013, she was only the twelfth child in the world to be identified with this genotype. We were told when she was 14 months old to “take her home and make her comfortable.” We have spent the last decade doing just that. The doctors have stopped making predictions about her lifespan and, along with us, are enjoying watching Emily making the most of her life. We have grown so much closer as a family and learned to truly enjoy each moment that we have on this earth. Despite the difficulties, Emily is truly the best blessing we could ever have. Her infectious joy and love have touched hundreds of lives, but most of all, our family.  We are so grateful for the chance we have been given to have our lives changed by our daughter and sister.


The Ward Family

Daniel, Ashley, Gemma, and Jolene/Tina & Larry


The Webb Family

Kyle, Christin, Mabry Kate, and Owen

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.

Read more

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 23 years, married for 22. Our oldest is Melaney (22), Mason (20) Bryce (15) Angel Marshall (14), and Michael (12).

Read more

Click here to listen to Tammy's Podcast Episode