Richard Engel Continues His Fight to Find a Cure for Rett Syndrome Eight Months After Losing Son to the Disease: ‘We Have a Vendetta’

“Our Rett syndrome research will continue to push as hard as possible to develop treatments. This is how we will honor Henry’s life,” Zoghbi said – adding that Henry dying was ‘one of the hardest days in our career.’ Her team at the institute grew very close to Henry over the last four years of his incredible life. 

Mary Forrest Engel remembers her son as someone with ‘no bad qualities’ who was ‘so hard working.’ She loved how tenacious he was in everything that he did, adding that he ‘had to do so much that a child should not necessarily have to do.’ Nonetheless, Henry did it and did it with a smile – he never gave up. 

“We have a vendetta against Rett syndrome and we want to cure it. We don’t want anyone else to go through this. We don’t want any other child to lose their life. Henry lost his life to Rett syndrome, and we want it gone,” Mary continued – adding that she now writes a letter to Henry in a journal every night. 

What Is Rett Syndrome? 

According to the International Rett Syndrome Foundation, Rett Syndrome is a ‘rare genetic neurological disorder’ that’s ‘caused by mutations on the X chromosome on a gene called MECP2.’ The disease has no known cure, but there are ways to treat it and ensure the best life possible for the individual diagnosed. 

“A single, devastating typo in his genetic code robbed him of the ability to walk, talk and control his body. And it caused numerous underlying health conditions, including impacting his breathing,” Henry’s father said on the TODAY show. In his final months, Henry’s condition worsened due to his dystonia diagnosis.

Some of the most common symptoms of Rett Syndrome include loss of speech, loss of purposeful use of hands, involuntary hand movements, loss of mobility, loss of muscle tone, seizures, scoliosis, difficulty breathing properly, sleep disturbances, and slowed rate of growth (head, feet, and hands). 

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There are nearly 1,000 different mutations found in the MECP2 gene and Henry’s mutation was unique to only him. The disease most often occurs in females, but is more severe in males and is known to occur in 1 of every 10,000 live female births. Doctors will continue to find a cure for the disease that affects so many innocent children.