Delaney smiling in her baby activity center

9 months & counting

A race against the clock · a light at the end

Nine months ago, Delaney had 48 hours.

Now she's fighting on. A rare disease, a one-of-a-kind gene therapy, and a family refusing to give up. Help us carry her to the finish line, and create hope and the possibility of a cure for kids with rare diseases everywhere.

Read her full story

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$138,856raised so far

14% of goal$1,000,000 goal

Our total includes donations raised on GoFundMe, plus gifts made through Pledge.

Where your gift goes

Every dollar raised directly covers the work keeping Delaney alive and paving the way for the children who come after her.

Delaney's specific care

Round-the-clock cardiology monitoring, hospital stays, and travel to specialized centers.

The research behind her therapy

The experiments, materials, and lab time that turn her own cells into a treatment.

Getting it to her safely

Emergency FDA pathways and safety testing so the therapy can reach Delaney.

Paving the road for future kids

Every step is documented so the next family starts with a map, not a wall.

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The story

From a terrifying diagnosis to a life being rebuilt, one month at a time.

Delaney was born with a rare genetic disease called Noonan syndrome with Multiple Lentigines, caused by a mutation in PTPN11, and her heart is paying for it. What gives this family hope is new science: gene therapy designed by AI can now be built for a single patient.

The treatment being built for her is also a blueprint, the same path any family with a rare condition could follow. And it matters far beyond one child: rare diseases affect more than 30 million Americans, and over 95% of them have no approved treatment. No family's access to answers should depend on a lucky coincidence. How Delaney's diagnosis met this technology is the story we told in full, once, on the Delaney's Story page.

Read her full story

48 hours

Doctors told the Holian family Delaney might not survive her first days. Born with an ultra-rare mutation, she spent six weeks in the NICU.

20% chance

She was given a 20% chance of reaching her first birthday. Born deaf, with striking blue eyes, she defied each prediction, week by week.

9 months

Today Delaney is home, smiling, and reaching milestones her family once feared might never come. But her heart is running out of time.

The problem

30 million

Americans are living with a rare disease, across more than 10,000 distinct conditions. Most of them will never meet a doctor who has seen their case.

95%

of rare diseases have no FDA-approved treatment. The gap isn't only science. It's that nothing exists to build a path for a single patient.

An automated liquid-handling robot pipetting barcoded DNA sample tubes in a genomics laboratory — Automated liquid handling in a genomics lab · Photo: National Cancer Institute

The miracle

A patient-of-one cure, built just for her.

Delaney's mutation is driving severe, rapidly progressive hypertrophic cardiomyopathy, a thickening of the heart muscle that leaves her heart unable to pump properly. There is no approved treatment, and she isn't eligible for a heart transplant.

With no roadmap, her parents became their own research team overnight. Rare To Scale carries that load alongside her clinicians, building an options map from standard care and existing trials to therapies tested first on the patient's own cells.

Behind her care are Dr. Bruce Gelb at Mount Sinai, a world authority on this family of disorders, and Ross McCray, who built VideoAmp and founded Thesis, a company developing autonomous wet labs and computational biology. Thesis works with Delaney's care team today, assessing preclinical feasibility as her treatment takes shape. Rare To Scale does not manufacture therapies or promise outcomes, but can offer hope.

Treatment timeline

01
Patient-derived stem cells. Cells are collected from Delaney and engineered in the lab to test custom therapeutic interventions on her own tissue.
02
AI gene correction. AI models map Delaney's exact PTPN11 mutation and design a repair tailored to her heart, validated cell by cell.
03
Lab & clinical pipeline. Laboratory synthesis, emergency FDA regulatory pathways, and safety testing move the therapy toward Delaney.
04
A blueprint for other children. Every step is documented so the next family starts with a map, not a wall.

The people

The team turning a rare disease into a curable one.

Rare To Scale brings together a builder who funds the impossible, the scientist who knows Delaney's disease better than anyone, and a gene-editing pioneer shaping the tools that can one day fix it.

Ross McCray

Founder, McCray Foundation

mccray.org

A father of four who built VideoAmp into a $1.7B+ company, then pledged the majority of his wealth to science through the McCray Foundation. He founded Thesis, which builds autonomous wet labs and computational biology to accelerate discoveries, the engine that can make one-of-a-kind cures possible for children the system overlooks.

Dr. Bruce Gelb

Gogel Family Chair · Director, Mindich Child Health & Development Institute

Icahn School of Medicine at Mount Sinai

A world authority on Noonan syndrome and the RASopathies, the very family of disorders Delaney was born with. His lab uses patient-derived stem cells to model rare heart conditions and hunt for therapies where none yet exist.

Kiran Musunuru, M.D., Ph.D.

Barry J. Gertz Professor · Co-Director, Penn Medicine/CHOP Orphan Disease Center

Perelman School of Medicine, University of Pennsylvania

A pioneer of CRISPR gene-editing therapies for cardiovascular disease, working to turn a single corrective edit into a lifelong cure, and to extend the same toolkit to rare diseases once deemed too small to treat.

Dr. Barry Byrne

Director, Powell Gene Therapy Center

University of Florida

A pediatric cardiologist who leads one of the most experienced gene therapy programs in the world, carrying corrective genes into the cells that need them. His team has treated more patients with this approach than any other program in the United States or Europe.

Dr. Kristen Wigby

Clinical Geneticist · Precision Medicine Clinic

Rady Children's Hospital-San Diego

A clinical geneticist and dysmorphologist who co-founded and directs Rady Children's Precision Medicine Clinic. Her work turns rapid genome sequencing into an actionable diagnosis, the first step toward a therapy that has never been made before.

Dr. Matt Bock

Pediatric Cardiologist · Medical Director, Heart Failure & Transplantation

Rady Children's Hospital-San Diego

A pediatric cardiologist who leads the heart failure and transplantation program at Rady Children's Hospital-San Diego, caring for children whose heart muscle has grown too thick to pump safely.

Ryan J. Taft, Ph.D.

Chief Scientific Officer · Head of Precision Medicine, EspeRare

Genetic Alliance

A geneticist who leads global programs expanding access to advanced genomic diagnostics and tailored therapies for children with rare and undiagnosed diseases. He is the scientific founder of iHope, a worldwide network bringing clinical genome sequencing to patients who would otherwise go untested, and leads a consortium delivering custom antisense therapies to children outside the United States. Previously he held senior genomics leadership roles at Illumina and Tempus AI.

David Leavy

Former Chief Operating Officer, CNN Worldwide

Warner Bros. Discovery

A media executive who most recently served as Chief Operating Officer of CNN Worldwide, overseeing commercial, revenue, operational and technology operations worldwide. A 25-year veteran of Discovery and Warner Bros. Discovery, he helped steer the company's NASDAQ listing, the launch of discovery+ and the Olympic Games rights agreement across Europe. He earlier served as Chief Spokesman for the National Security Council in the Clinton White House, and sits on the boards of Colby College and the Salisbury School.

Robyn Saskia Cortese, PharmD

Pediatric Clinical Pharmacist · Co-Founder

Rubinstein-Taybi Syndrome Foundation

A pediatric clinical pharmacist, Air Force veteran, and rare disease advocate who co-founded the Rubinstein-Taybi Syndrome Foundation with two fellow RTS mothers. Through her clinical practice and advocacy, she works to connect science with the needs and priorities of rare disease families.

Jessica Beatus

Doing Well by Doing Good

doingwellbydoinggood.agency

A strategic partnerships and business development executive with more than 15 years leading high-impact work across technology, media and social impact. She has served as Head of Business Development & Partnerships at GoFundMe and Group Vice President at Warner Bros. Discovery, working with leading global brands, NGOs and C-suite leaders to align commercial growth with measurable social impact, guided by a belief in profit on purpose.

In the NICU

“She was born with a heart too rare to treat and a fight too fierce to count her out.”

Six weeks in the NICU. A feeding tube, a heart monitored around the clock, and a father in uniform who never left her side. Delaney's first months were measured in machines and milestones most families never see.

As featured in

NBC 7 San Diego

Carlsbad Navy family turns to AI in search for treatment for daughter with rare genetic disorder

Image: NBC 7 San Diego

San Diego's Morning News · Podcast

A Carlsbad family needs help securing an AI genetic therapy that could save their baby's life

Image: iHeart

Community Movie

Create a Hero. Save a life.

Image: FamAI

The family behind the fight

The Holian family: Daniel, Erin, and their children

Daniel & Erin Holian

U.S. Navy family · Carlsbad, CA

Delaney's parents, Daniel and Erin, started this fight for their daughter, and for every family that's been told their child's disease is too rare to matter. Rare To Scale exists to carry this work beyond Delaney, to the children still waiting.