we cannot treat what we do not diagnose
Can you imagine your baby being critically ill and doctor’s not knowing why? It takes an average of 5-7 years to obtain an accurate rare disease diagnosis. However, half of rare disease patients are children, and 30% will not survive to their 5th birthday. Minutes matter when diagnosing critically ill babies and children to help save and improve their lives.
The growing support for Project Baby Dillo includes over 57 rare disease and patient organizations. The rare disease community understands the need to act urgently to end the diagnostic odyssey. At an average of 5-7 years to secure an accurate diagnosis; access to the diagnosis is a top barrier to access in the rare disease community. WGS is an effective tool at ending the diagnostic odyssey for most rare disease patients.
You can still sign on to support Project Baby Dillo.
We thank the organizations that signed on to support Project Baby Dillo to provide access to the diagnosis for undiagnosed NICU and PICU patients.
Doctors whisked Hunter Davis, the youngest child of Texas Rare Alliance’s President, Khrystal K Davis, to the NICU at birth. Hunter couldn’t breathe on his own, and his carbon dioxide levels continued to rise placing him at risk for organ failure. Doctors could not figure out what caused Hunter to be too sick to breathe or eat on his own, and his diagnosis wouldn’t come until 8 weeks later after much damage had been done.
Khrystal proposed Project Baby Dillo in Texas to provide access to WGS and help diagnose critically ill babies and children faster, so doctors can save and improve the lives of more babies and children. You’ll hear her frequently say, “We cannot treat what we do not diagnose.”
The Project Baby Dillo pilot program requests $4 million funding from American Rescue Plan Act funds (or General Revenue or other available funds) for a Project Baby Dillo Critically Ill Newborn Whole Genome Sequencing Demonstration.
Texas currently has funding available for Project Baby Dillo. Funding for Project Baby Dillo is available under the American Rescue Plan Act (ARPA) of 2021 Coronavirus State and Local Fiscal Recovery Funds. Project Baby Dillo is eligible for the funding because it seeks to provide WGS to low-income NICU and PICU patients with unknown etiologies.
Low-income patients experience a protracted diagnostic odyssey due to socioeconomic implications. The COVID pandemic increased barriers to access for low-income patients, including access to the diagnosis. WGS would improve access to the diagnosis and efficacy of public health, including access to early childhood interventions. Project Baby Dillo will help free up precious medical resources for COVID-19 patients during the pandemic.
Project Baby Dillo complements the Texas Newborn Screening (NBS) Program. Project Baby Dillo aims to provide to WGS for undiagnosed critically ill babies and children when minutes matter to identify conditions not included in newborn screening. Texas is a leader in NBS by screening roughly 400,000 babies twice for 57 conditions each year. However, there are more than 7,000 rare diseases, 70 of rare diseases impact babies or children, and many of these conditions make babies and children critically ill. The Texas NBS Program currently screens for fewer than 1% of rare conditions.