Life 4 Liam
Meet the NPC Superstars
Played at the Starlight Soirée. A little girl’s voice walks through the NPC Superstars — their names and faces, the hard parts of this disease, and the joy that is still theirs. Kelly Lee, Gracie’s mom, made the film.
Friends
This fight is bigger than one boy.
Life 4 Liam started with Liam. These are the children in the fight with him, and the films their families shared for fundraisers. The full videos also live on YouTube @Life4LiamAndFriends. NPC organizations and the companies working on treatments are on the Community page.
Willow’s story, told by her mom Krystal
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.
Facing NPC: Reagan’s inspiring journey
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’s journey with Niemann-Pick Type-C
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’s story: living with NPC
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.
NPC kids
A short made from the same family posters we hang at fundraisers — children living with NPC, and children we remember.
Friends of Liam 
Names we carry into the room.
Some children are still in the fight. Some are our NPC angels. We keep their names here.
August 1999 – April 2020 · #Hope4Hayley
Hayley Koujaian
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 brother · living with NPC
Alec Koujaian
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.
Bailey 2000–2007 · Brianna 2003–2009
Bailey and Brianna Patterson
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.
April 2002 – April 2006
Cristina Nicole Lezeu
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.
Remembered by mom Nadia
Zayn Slatch
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.
Diagnosed at 2½
Emily Sanda
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.
Diagnosed February 2013, at age 9
Kailey Florkiewicz
NPC took dancing, cheering, soccer, and speech. Music, movies, and family still light her up. She refuses to let NPC be the whole story.
Emmy · one of six siblings
Emerson Schrivener
Makeup, glitter lotion, slime, painting with little sister Charlie. The vibrant soul of a big family, and a fighter beyond her years.
Born March 2006
Johnathan Spencer
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.
Diagnosed at 3
Victoria “Vivi” Costache
Hearing, balance, and memory have been touched by NPC. Ask Vivi how she is and she will tell you she is absolutely perfect.
#HopeforBrynneandKendall
Kendall and Brynne Moore
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.
Firefly Fund · Austin
Belle and Abby Andrews
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.
Tyler 1997–2005 · Katie 2001–2016 · Faith 2003–2018
Tyler, Katie, and Faith Heinze
Three siblings. Faith diagnosed January 2004. Sister Serina honors them as a Make-A-Wish volunteer manager. Patience, perseverance, unconditional love.
Diagnosed at 8 · #zoeysmiles
Zoey Afford
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.
Your family’s story
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.