Constance & River Wu
Who We Are
Constance and River are identical twin girls who were born in July 2023.
In May 2025, we noticed sudden abnormal movements in Constance and rushed her to the emergency room. That night, she was transferred to Children’s Hospital Los Angeles.
In July 2025, after an extensive genetic testing, both girls were diagnosed with 3-Hydroxyisobutyryl-CoA Hydrolase (HIBCH) Deficiency.
HIBCH Deficiency is an ultra rare genetic disorder that can lead to developmental delays, movement difficulties, feeding challenges, and sudden metabolic crises that cause brain injury.
Today, there is no cure. Without treatment, children face a shortened lifespan and severe neurological disability.
Our hope is to race against time and find a treatment before the next metabolic crisis.
We believe that with focused research, generous donations, and the right team, a treatment is possible—not just for our girls, but for all children with HIBCH Deficiency. Please join us in this effort.
About HIBCH Deficiency
HIBCH Deficiency is an ultra rare genetic disorder that disrupts how the body breaks down the amino acid valine, a building block of protein. When this step in metabolism fails, a highly toxic compound called methacrylyl-CoA builds up in cells, especially in the brain. The toxic buildup can trigger:
Developmental delays in motor and cognitive skills
Movement difficulties such as low muscle tone, tremors, or loss of coordination
Feeding challenges that may require tube support
Sudden metabolic crises, which can cause permanent brain injury
Currently, there is no cure. Supportive care may include a low-valine diet, carnitine, citrate, and antioxidants such as CoQ10, but these do not address the root cause of the disorder.
Mission
Our mission is urgent: to find a treatment for Constance and River before another metabolic crisis causes irreversible brain injury. ReGENErate Hope was founded to create a path to treatment for all children with HIBCH Deficiency who face this prognosis.
Because this disease is so rare, no commercial program currently exists. Through reGENErate Hope, we are building the partnerships, funding, and research infrastructure needed to move from diagnosis to therapy.
We are committed to:
Advancing translational research through biomarker discovery, cell models, and preclinical studies
Partnering with leading scientists and biotech companies to pursue ASO and gene-editing strategies
Laying the groundwork so that every future family diagnosed with HIBCH Deficiency has a clear path forward
With the right team, focused research, and urgent action, treatment is within reach. Achieving this will require significant investment—millions of dollars directed toward research and development. Every contribution brings us closer to ensuring that no family faces this disease without hope.
Contact Us
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