Historias de pérdidas
Historias de pérdidas
Since we began the Danny Did Foundation, we have met too many families who have lost a loved one due to epilepsy. On this page, we share some of their stories. Whether the passing is a result of SUDEP, status epilepticus, an accident, new-onset refractory statues epilepticus (NORSE), or another form of epilepsy-mortality, each one is a tragedy. If you have lost someone and would like to tell us about them, please contact us at [email protected].
Haddou Family, Virginia
Hannah is my only daughter and firstborn. She is the light of my life. Hannah was diagnosed with epilepsy in February 2023 during her junior year of high school. We were told that everything was under control and that she should be able to live a normal life.
Hannah had big dreams. She wanted to be a psychologist and work at a juvenile detention center. She believed that everyone deserves a second chance. Unfortunately, she didn’t get hers.
On April 12th, I was waiting for Hannah and my husband to come home for the weekend. Instead, I received the worst news any parent could ever hear. Hannah was 19, just four weeks away from finishing her freshman year at George Mason University. My husband had moved with her and rented an apartment close to campus.
That morning, he came home from work as usual to pick her up and head back for the weekend. He found our baby, stiff on the bathroom floor. He called 911 and attempted CPR, but my baby was already gone.
To say I am broken is an understatement. I feel guilty to breathe this air without her. Hannah was my whole world. No one had ever talked to us about the risks. I hadn’t even heard of SUDEP until after Hannah passed.
I pray that no parent ever has to feel this pain—it is unbearable.
Culvahouse Family, Texas
Kaylee Ashlyn Culvahouse was born on July 23, 2008, and from the very beginning she lit up the world around her. Though she was diagnosed with 1p36 Deletion Syndrome and faced challenges most of us cannot imagine, Kaylee lived each day with joy, strength, and love.
At just six months old, she was diagnosed with infantile spasms, a catastrophic seizure disorder, and endured months of intensive treatment. Over the years she also faced global developmental delays, vision and hearing challenges, cardiomyopathy, and Wolff Parkinson White Syndrome. Yet through it all, she radiated resilience.
When she was almost four, Kaylee experienced her first tonic-clonic seizure. Over her lifetime, she had a total of just 12 tonic-clonic seizures and only two hospitalizations. For more than three years leading up to late 2022, she was seizure-free.
Kaylee loved school, music, swimming, her iPad, and days at the beach. She especially loved toys that lit up, talked, or sang. Trips to Jason’s Deli for mac and cheese and ice cream were among her favorite weekly treats. She was a devoted sister to Allison and Colton, and she brought laughter, hugs, and light to everyone who knew her.
On March 20, 2024, Kaylee had her final seizure at home. It happened during the day. Her family had stepped out of her room for less than one minute, and when they returned, she was already unresponsive. Despite every effort to save her, she could not be revived. She was just 15 years old.
Kaylee was more than her diagnosis. She was light in its purest form, teaching compassion, patience, strength, and unconditional love. She showed her family that life can be beautiful, even when it does not look the way you imagined.
Familia Schlobohm, Minnesota
En cariñosa memoria de Melissa Schlobohm-Clover: Mientras Melissa Schlobohm-Clover vivió con nosotros en la tierra, su carácter se resume mejor como amante de la diversión, independiente pero una persona pura y sencilla que amaba a su familia. Deja atrás un montón de amistades creadas y fomentadas a lo largo de todas las etapas de su vida. Mientras crecía, exhibió su caballo en 4-H y en el instituto fue capitana del equipo de voleibol. Fue una devota esposa, madrastra, hija y hermana. Era conocida por su risa y sonrisa, ambas iluminaban una habitación. A Melissa le gustaba trabajar duro y jugar duro. Su carrera de administración de empresas la llevó a apoyar tiendas en varios otros estados, incluyendo su favorito, California. Pero su hogar siempre fue Minnesota. En sus 37 años, sólo se perdió una Nochebuena en casa con mamá, papá y su hermana, debido a una tormenta de nieve en Wisconsin, donde fue a la universidad.
Melissa se fue a vivir al Cielo el domingo 13 de marzo de 2022, a causa de SUDEP, o Muerte Súbita Inesperada en Epilepsia. Ese domingo por la tarde estaba durmiendo la siesta en el sofá mientras su marido estaba sentado cerca viendo la televisión. Tuvo un ataque y, cuando terminó, había dejado de respirar y ni su marido ni los paramédicos pudieron reanimarla. Tenía 37 años y padecía epilepsia desde hacía 20.
Lea aquí el recuerdo completo de los padres de Melissa.
Familia Bawolek, South Elgin, Illinois
In loving memory of Cameron Balowek: As a kid, our son Cameron Bawolek of South Elgin looked up to his two older brothers, trying to keep up with them. One of his brothers played the drums, and Cameron took up the drums. All three of his siblings, Collin, Nathan, and Ellie, were swimmers. Cameron swam for both the St. Charles Swim Team and St. Charles North High School swim team over about 6 years. But lacrosse was the sport he loved!
Cameron’s sudden death took place on August 14, 2021, at the age of 20. We lovingly remember him as a young man who played on multiple club teams throughout his youth and for four years on the St. Charles High School Lacrosse team. As a senior, at the year-end banquet, Cameron won the award for “fastest shot”. Cameron also liked and had a natural talent at “frolf” (frisbee-disc golf). He spent many summer days playing with his friends.
Read the full remembrance by Cameron’s parents here.
Familia Mantzios, Lincoln, Nebraska
In loving memory of Nicholas A. Mantzios: Nick graduated from Lincoln East High School in 2009 and Case Western Reserve in Cleveland, Ohio, with a Bachelor of Science Degree in Biomedical Engineering in 2014. He worked for Invacare and Zimmer Biomet in Ohio, and spent the last two years of his life working for Medtronic in Minneapolis, Minnesota.
Nick was an engineer, a scientist, a chef, a baker, a musician (drums and bass guitar), a comedian, a gamester, a lover of rollercoasters, movies and music, a follower of politics, a podcaster (High Quality Podcast Action HQPA), and a great friend to many. He was well-loved and loved well. He is remembered for his ability to lift his friends up with humor and his positive energy.
Nick passed away on December 1, 2019. Read the full remembrance by Nick’s parents here.
Hurt Family, Omaha, Nebraska
In loving memory of Erin Hurt: Erin was born at Methodist Hospital in Omaha, Nebraska, one minute after her twin sister (Haley) in the early morning hours of October 6, 2006. Born 8 weeks premature, Erin weighed in at just over three and a half pounds. She spent her first five weeks in the NICU, where I watched over her, along with her grandma and grandpa. Erin thrived after she got to go home, and grew into a beautiful girl, with big brown eyes and thick curly brown hair (which she hated but everyone else loved). She was smart, spunky, fun-loving and thoughtful. She had a special place in her heart for cats, friends, taking care of children and singing (in that order). She was a special girl and was loved by many.
Erin passed away on April 17, 2019. Read the full remembrance by Erin’s mom here.
Wood Family, Corvallis, Oregon
Gracias por enviarme esta información sobre la conferencia PAME. Toda esta experiencia ya está resultando significativa y conmovedora para mí. Ha sido la primera vez que me he puesto en contacto con otras personas que han experimentado la misma devastación que mi familia, y estoy muy agradecida por la labor de su fundación. Estoy deseando que llegue la conferencia, e incluso tener la oportunidad de asistir a una sesión con uno de los investigadores con los que mi familia ha trabajado a distancia sobre la conexión cerebro-corazón en la SUDEP. Gracias de nuevo por esta oportunidad.