Life 4 Liam started with Liam. The work is for every family living with Niemann-Pick Type-C. These stories were shared with us for fundraisers, and the full videos now live on YouTube @Life4LiamAndFriends. NPC organizations and the companies working on treatments are on the Community page.
Willow Hemsley (2017–2025) · Krystal Samuelson
Diagnosed at 3 after two years of searching. Willow lost walking, talking, and self-feeding, and still met the world with a smile — horses, Moana, family. Krystal shares the 24/7 care and the fight that continues in her honor.
Reagan · Meredith and Evan Piotti · sisters Cece and Jackie · Bellingham, MA
First signs were falling at 3 and 4. The family raced into expanded access for Adrabetadex. Medicine brought energy, short walks, crafts, and school learning back. Early action, they say, is the whole fight.
Gracie Lee · Kelly Lee · Texas
Seven years of searching — an autism label, then seizures, then losing the bicycle. Kelly and Gracie talk about the diagnosis at 16–17, the wait for investigational medicine, daily care, and the rare-disease community.
Valentine and her family
A family tribute to Valentine, a little girl living with Niemann-Pick Type-C — the rainbow-dress video families asked us to collect and share.
A short made from the same family posters we hang at fundraisers — children living with NPC, and children we remember.
Some children are still in the fight. Some are our NPC angels. We keep their names here.
She graduated high school as the gym roared. Special Olympics, choir, dance, a bakery job, a coffee cart. Family credits Adrabetadex with extra years of quality of life. Her brother Alec also lives with NPC.
Hayley’s diagnosis led to Alec’s early detection. Associate’s degree in Fire Science. He drives, works, and advocates so every person with NPC can reach the medicines that kept him going.
Sisters who were never far from each other’s side. A mother’s poster remembers Bailey Boo’s smile and Brianna’s sass — two spirited girls, gone too soon.
Diagnosed at 8 months. Loved dolls, dresses, birdsong, trips to Europe, and Saturday music with Amy. Loredana Lezeu: she fought until the last day. Same family name as Liam’s mom.
Four years on earth. A smile that lit the room, a laugh that melted hearts, courage through medical battles. His mom writes that he has now lived longer in heaven than he did here.
Disney princess, independent, always included in her brothers’ superhero games. Not expected past 10 or 12; the poster marks her heading toward 21, still fighting, needing full care.
NPC took dancing, cheering, soccer, and speech. Music, movies, and family still light her up. She refuses to let NPC be the whole story.
Makeup, glitter lotion, slime, painting with little sister Charlie. The vibrant soul of a big family, and a fighter beyond her years.
Months in the ICU as a newborn with liver failure, no name for it. NPC confirmed after nearly four years. Spinal Adrabetadex. A thumbs-up and time with friends.
Hearing, balance, and memory have been touched by NPC. Ask Vivi how she is and she will tell you she is absolutely perfect.
Sisters. Kendall (2017 diagnosis, also Crohn’s) and Brynne both on Adrabetadex. Cheer, dance, music, and two infectious smiles through walking, speech, and swallow changes.
Two sisters who devour life. Belle the healer, Abby the entertainer. Their parents founded Firefly Fund. Diagnosed March 2016; among the earliest children on VTS-270 / Adrabetadex.
Three siblings. Faith diagnosed January 2004. Sister Serina honors them as a Make-A-Wish volunteer manager. Patience, perseverance, unconditional love.
Ataxia in the hands, then hearing loss and eye palsy. A neurologist ordered genetics after a misdiagnosis and caught NPC early. Cheer, swim, best friend. Love, hope, and smile.
If you live with NPC and want your story listed here — a news clip, a conference video, a written profile — send the public link to jordan@life4liam.com.
Life 4 Liam