Rare to Scale

From 48 Hours to 8 Months: Delaney’s Fight Against the Clock

From the moment our sweet Delaney was born, she has been defying every odd. Her father, Daniel, serves in the U.S. Navy, and while he is used to standing strong in service, nothing could have prepared our family for the battle we are facing at home. Delaney was diagnosed with an ultra-rare genetic disorder ($PTPN11$ mutation / Noonan syndrome with Multiple Lentigines). The condition causes severe hypertrophic cardiomyopathy (HCM), a rapid thickening of her heart muscle that makes it increasingly difficult to pump blood.

When Delaney entered the world, doctors told us she had just 48 hours to live. Later, we were told she had only a 20% chance of reaching her first birthday. Delaney had other plans. Day by day, week by week, our little girl fought back. Today, she is 8 months old, full of joy, smiling, and bringing light to everyone who meets her. However, conventional medicine has officially reached its limits, and doctors recently shared the heartbreaking news that her heart may only have months left without intervention. We refuse to give up on Delaney, because she hasn't given up on us.

The Miracle Breakthrough: A Patient-of-One AI Genetic Therapy

Just as traditional options closed, we connected with a pioneering AI bioengineering team and Dr. Bruce Gelb of Mount Sinai, a world-leading genetic expert. Using cutting-edge AI genomic models, they have mapped Delaney’s specific mutation and designed an individualized genetic therapy tailored to her heart. What once took decades of pharmaceutical development can now be modeled in hours. The science is ready and the team is in place. Now, it is an urgent race against time to produce the therapy.

Supporting Rare to Scale

Your donation will support the development and administering of custom, single-patient genetic therapy:

• Patient-Derived Stem Cell Work & Lab Validation: Engineering and testing custom therapeutic interventions on Delaney's cells.
• Autonomous Lab & Clinical Pipeline: Funding laboratory synthesis, emergency FDA regulatory pathways, and safety testing.
• Building a Blueprint: Paving the way so this AI-driven pathway can scale to save other children facing rare, "unprofitable" diseases.

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Thank you from the bottom of our hearts!