LIFESTYLE & COMMUNITY
It Is Hard To Be A Special Needs Parent: NBC News' Richard Engel's Son Diagnosed With Rett Syndrome. What Is It?
Childbirth is one of the most beautiful things that can happen in the life of any parent. And it is even more exciting to know that your baby is healthy. However, some conditions can show up later on and strike with the devastating force. Such thing happened to NBC News’ correspondent Richard Engel and his wife, Mary Forrest. Their toddler son had been diagnosed with an extremely rare condition called Rett syndrome.
For more info about the research being done with Henry and how it could hopefully help him and others, the lab is https://t.co/gr65xO8GSk story coming up @TODAYshow 7/7 pic.twitter.com/pi5spiMqD5
— Richard Engel (@RichardEngel) January 30, 2018
Henry Engel was born in October 2015 and was absolutely healthy. There was no evidence of the baby having any issues. However, when the parents noticed their son’s obvious slow development, they decided to consult with a specialist. The diagnosis was unpromising – Rett syndrome. The father opens up about his feelings:
For us, and undoubtedly for others facing similar challenges, the diagnosis changed everything in an instant. We mourned the future we hoped he would have of school, sports and perhaps a family of his own one day. We mourned the future we thought we would share with him. We had to come to terms with a new future, also full of love, but profoundly different.
What is Rett syndrome?
Rett syndrome is an extremely rare genetic neurological disorder that typically affects girls. It is caused by a mutation of X chromosome. Researchers believe that a single mutation in a gene called MECP2 can influence further development of the person by changing neural connections.
The condition was believed to be a part of Autism Spectrum Disorder, but we know now that it is basically genetically based. What we also know is that despite the condition is genetic, it is unlikely for children to inherit the gene mutation from their parents. Such mutations may occur randomly in DNA.
What are the symptoms of the condition?
The condition is even rarer in boys, as they have only one X chromosome. This makes the effects of the disease extremely dangerous and life-threatening. Most boys with Rett syndrome don’t live past birth. The symptoms of the disease typically show up after 1 year of life and include:
- Slow development. Even brain grows slower, making the head to be smaller than it should be (microcephaly). It can become noticeable in children after the age of 1-2.
- Issues with hands. It is characteristic for people with Rett syndrome to rub or wring their hands. The children can completely lose the ability to use their hands. They also can experience problems with muscles and coordination.
- No language skills. Children with Rett syndrome can completely stop talking at the age of 1-4 and develop serious social anxiety. They tend to stay away from other kids, people, or toys.
- Troubled breathing. Uncoordinated breathing and seizures are common in children with Rett syndrome. Other issues with breathing also may be present.
More thoughts, reflections on being a new special needs parent. I hope others with children facing challenges can relate. @MaryKForrest and I are learning from all your feedback. Thank you. @TODAYshow https://t.co/4PNoIhYg24 pic.twitter.com/AHDi5Dfx1I
— Richard Engel (@RichardEngel) January 31, 2018
Proud mom post: Henry at speech and language therapy today. He’s getting the hang of drinking from a straw and continues practicing a low tech version of eyegaze (soon to go high tech in addition) Go H!! pic.twitter.com/VjBrJqCRNn
— Mary Engel (@MaryKForrest) June 13, 2018
Rett syndrome is a life-long condition that doesn’t improve with time. Furthermore, the symptoms can worsen. Therapy, nutrition and medical care can help improve the quality of life for such people, but there is no cure. We thank the Engel family for sharing their story and raising awareness of the disease.
This article is solely for informational purposes. Do not self-diagnose or self-medicate, and in all cases consult a certified healthcare professional before using any information presented in the article. The editorial board does not guarantee any results and does not bear any responsibility for any harm that may result from using the information provided in the article.