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.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.
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.
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!
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.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.Click here to listen to Bobbi's Podcast Episode
The Bonacorsa Family
Mike, Kelly, & Sofia
KrabbeClick 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.Click here to listen to Lesa's Podcast Episode
The Brooks Family
Beth, Eden, and Estela
MLDClick 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.
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.
The Feldt Family
Alex, Kasey, Dawson, and Lukas
On July 16, 2019, Kasey gave birth to a perfect baby boy, Dawson Luke Feldt.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.
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.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.
The Hoffman Family
Brett, Alexandra (Lex), Sam, and Liam
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.
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
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!
The Marcucci/Bielak Family
Andrew, Kelly, and MadisonClick 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.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.
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.
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.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.”
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.
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.Click here to listen to Sheila's Podcast Episode
The Schroeder Family
Jeremy, Amanda, Brooklyn, Tegan, and Blaine
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.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
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.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).Click here to listen to Tammy's Podcast Episode