Currently, there isn't one, and treatment addresses symptoms, not the cause of them, according to NIH. It was a special time."Īs a geneticist and researcher, Zoghbi also values the moment that Henry met her team of students and scientists researching a cure for Rett syndrome. "This is the memory I'll always hold dear because he reacted to the books we gave him and the toys. That's really my last memory during his last visit." "He must have recognized everybody was celebrating him and everybody's excited about it. "I got some books, and the smiles I got from him - he was happy," she said. "(They) really worked very hard to protect him and give him physical therapy so that he could be as functional as possible," she said, adding that many boys with Rett syndrome die by age 2.Īnother standout moment from her time with Henry was one of his birthdays. Zoghbi attributes the fact that Henry lived longer than most boys with the disease to his parents, in part. But she was aware that his condition started to worsen a few months ago "in spite of the heroic effort his parents were doing with him," she said. "One of the visits, I was so excited because he did say, 'Dada.' That was a word we heard from him."ĭue to the pandemic and the Engels being based in the U.K., she didn't see Henry for two years prior to his death. "It was really amazing watching them work as a team," Zoghbi said. She added that Henry’s parents “worked so hard” to help him, doing physical and occupational therapy with him every day and advocating for research in hope that it could save their son and thousands of others. He had a lot of different weaknesses in his motor system." He would shake a little bit," she recalled. Males are more likely to die from the illness. MECP2 is found on the X chromosome, according to the National Institutes of Health, which females have two of, so it's even rarer and more severe in males because they only have one X chromosome, explained Zoghbi. When Zoghbhi uncovered that Henry was the first person observed to have his particular mutation to the MECP2 gene, she needed to do more research, so she recommended Henry be seen at Texas Children’s Hospital, where doctors could treat and track his symptoms to see if they followed the usual path for Rett syndrome. Your heart goes out, and you want to do everything possible." "You see a child who is helpless and who is sweet, and he’s connecting with you, but he really is suffering from this disease. "You feel the pain of Rett syndrome, and I felt that pain with so many patients before him," she continued. Tony Awards Go Dark, Won't Broadcast Live During Strike: Report "And you see him - how he's struggling to really do the best he can so he can move, so he can gain some strength to crawl or do something." "He has this smile that he looks at you - you'll see it in the pictures posted on the web - and naturally, you fall in love with him," she told TODAY. The Engels got in touch with Zoghbi, who’s been researching the disease for many years. After sequencing was performed on Henry, it was discovered that he had a mutation to the gene involved in Rett syndrome. Zoghbi first met Henry within his first year of life after Richard Engel and his wife, Mary, noticed their son wasn’t reaching usual motor milestones - the first sign of Rett syndrome for many children, according to the foundation. She recalled that losing Henry was "one of the hardest days" for her and her research team. Henry's cells could also advance research for other neurological conditions, such as autism, Zoghbi said in a TODAY segment aired April 13. This is how we will honor Henry’s life," Zoghbi said at a recent event honoring Henry at the Duncan Neurological Research Institute at Texas Children's Hospital in Houston, where she serves as director. "Our Rett syndrome research will continue to push as hard as possible to develop treatments. 21Ja6TOtjH- Richard Engel August 18, 2022 We always surrounded him with love and he returned it, and so much more. He had the softest blue eyes, an easy smile and a contagious giggle.
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