Henry's cells are being used to further the research on Rett Syndrome so that "others don’t have to endure this terrible disease."
Richard Engel and his wife are mourning the loss of their 6-year-old son Henry, who died after a battle with Rett syndrome.
“Our beloved son Henry passed away. He had the softest blue eyes, an easy smile and a contagious giggle,” the NBC News chief foreign correspondent tweeted on August 18, 2022.
“We always surrounded him with love and he returned it, and so much more. Mary and Richard.”
According to the Mayo Clinic, Rett syndrome is a rare neurological condition that alters how the brain develops. This incurable condition results in a progressive loss of language and physical skills.
In a follow-up tweet, Engel shared, “Researchers are making amazing progress using Henry’s cells to help cure RETT Syndrome so others don’t have to endure this terrible disease." He also provided a link to Texas Children’s Hospital, which is fundraising for the cause.
Our beloved son Henry passed away. He had the softest blue eyes, an easy smile and a contagious giggle. We always surrounded him with love and he returned it, and so much more. Mary and Richard. https://t.co/M8LV8SHv6r pic.twitter.com/21Ja6TOtjH— Richard Engel (@RichardEngel) August 18, 2022
"Henry Engel, a beautiful child and a true hero for fighting Rett syndrome, sadly passed away on August 9, 2022. Dr. Zoghbi and her team at the Duncan NRI, in honor of Henry’s life, will continue to work relentlessly to find a cure for his disease," the message on the fundraising page read.
Henry, who was born on September 29, 2015, took a while to meet some developmental milestones as a baby. His MECP2 gene had a mutation, as determined by a genetic test and a set of physical examinations, according to TODAY.
"MECP2 mutations cause Rett syndrome, a disorder that typically affects girls after their first birthday, robbing them of learned skills and leaving them with cognitive deficits, loss of speech, and a variety of motor difficulties," the Texas Children's Hospital page explained.
In 2018, Henry and his family visited the Duncan Neurological Research Institute at Texas Children's Hospital (Duncan NRI). Since then, Dr. Huda Zoghbi has researched Henry's mutation and found that MECP2 mutations result in Rett syndrome.
“Henry was special in so many ways. His loving and endearing smile, and the way he connected with his eyes, stole my heart from the time I met him. His quiet fight against this terrible disease was incredible. What is most amazing, however, is the impact Henry had on so many of us at the Duncan NRI and on our Rett research. We will continue to push as hard as possible to develop treatments. This is how we will honor his life,” Dr. Zoghbi said, in a statement.
"Henry made the best of every single day and worked tirelessly in his many physical and developmental therapies. He continues to be an inspiration for Dr. Zoghbi and her team as they work to find effective treatments for Rett syndrome, and they already are making significant progress with Henry’s own cells," the page added.
Rest in peace, little Henry.
Cover Image Source: Twitter | Richard Engel