NBC News correspondent Richard Engel announces the death of his 6-year-old son, who had Rett syndrome
NBC News chief foreign correspondent Richard Engel shared the sad news Thursday that his 6-year-old son, Henry, has died. Engel and his wife were open about the baby’s battle with a rare genetic condition.
“Our lovely son Henry has passed away,” Engel wrote on Twitter. “She had the softest blue eyes, an easy smile, and a charming laugh. We always surrounded her with love and she returned it, and more.”
Rett Syndrome: What is Rett Syndrome? symptoms and treatment
What is Rett Syndrome?
Rett syndrome is a neurological genetic problem. In which the person’s brain does not do the movement of body parts, muscles, speech, eyes, etc. In simple words, it can be said that the brain is incapable of performing bodily functions.
A child with Rett syndrome is born and develops like normal children. But, by the age of six months, he starts being unable to do many things. For example, does not speak, walk, use his hands, etc. With the passage of time, the problems due to Rett syndrome increase. Which later turns into Intellectual disability.
Rett syndrome is divided into four stages:
Stage 1- In the very first stage, some symptoms of Rett syndrome start appearing. When the child is between 6 to 18 months of age, he shows less interest in eye contact and playing with toys, etc. Also, sitting and walking also take more time than normal children.
Stage 2- When the child is between 1 to 4 years of age, the intellectual disability in the child becomes clearly visible. He is unable to speak very clearly. Apart from this, the child starts crying without any reason. The child is unable to coordinate with society.
Stage 3- This stage is seen between four to ten years. The child starts talking little by little. But, no special development is seen in his movement.
Stage 4- The fourth stage is seen after the age of 10 years. In which the muscles of the child start weakening. Apart from this, there are also problems like lack of walking and lack of strength in the bones. However, the communication and hands-on work in the child remains the same.
How common is it to have Rett Syndrome?
Rett syndrome is a rare problem. This neurological disorder affects girls more. Contact your doctor for more information.
What are the symptoms of Rett syndrome? (Symptoms of Rett Syndrome)
Common symptoms of Rett syndrome are:
Slow development: After the birth of the child, his mental development is very slow. The size of the head of a child with Rett syndrome is smaller than that of normal children. At the same time, physical growth is also very slow.
Lack of coordination and normal movement: There is a lack of normal movement in the child, such as walking, speaking, etc. The child is neither able to speak clearly nor able to sit properly.
Inability to speak clearly: There is a problem with communication in a child with Rett Syndrome. He can neither speak nor see properly. He shows absolutely no interest in toys and people around. Some children suddenly become silent (Loss of speech). At the same time, in some children, it starts improving with time.
Abnormal movements of the hands: Children with Rett syndrome have strange hand movements compared to normal children. For example, clapping, rubbing, patting, rubbing hands, etc. without any reason.
Abnormal eye movement: Children with this syndrome blink their eyes frequently or keep their eyelids looking at something or keep one eye closed all the time.
Respiratory problems: Such children breathe rapidly or hold their breath. Apart from this, try to take air through the mouth.
Abnormal Behavior: Children with this syndrome may also have agitated behavior. Apart from this, he also starts crying without reason. Start laughing without reason. Chewing on hair or clothes. Starts licking hands. Seeing this behavior, it will seem that the child does not have the intellectual ability.
Scoliosis: Children with Rett syndrome often develop scoliosis. This condition is usually seen between 8 and 11 years of age. In scoliosis, the spine becomes curved.
Irregular heartbeat: In Rhett syndrome, there is an irregular heartbeat in the child. Due to this, the child may also die suddenly. Due to so many health-related problems, the child also suffers.
Apart from this, the size of the hands and feet are smaller than normal. There is a problem with chewing and swallowing. Bones get fractured due to weakness.
When should the afflicted child see the doctor?
If you notice problems other than those mentioned above, you should take the child to the doctor immediately. like :
- The slow growth of body parts
- Poor movement or coordination
- Unusual hand movements
- Loss of eyesight
- Behavioral problems and mood swings
- Start speaking late and not speaking clearly
What are the causes of having Rett syndrome? (Cause of Rett Syndrome)
Rett syndrome is caused by mutations in the X chromosome. Not much is yet known about the gene that causes this syndrome. Researchers believe that a single gene binds several other genes to cause Rett syndrome.
However, Rett syndrome is a genetic disease. Which comes in a child from his parents. If a boy has Rett syndrome, he will hardly be able to survive after birth. This is because boys have only one X chromosome and girls have two. Therefore, the gene for Rett syndrome proves to be fatal for boys.
What problems can I have with Rett Syndrome?
Rett syndrome is a Rare syndrome. It cannot be said clearly about the risk factor of this disease arising from a genetic mutation. In some cases, heredity is responsible, in which Rett syndrome can be passed on to the child from other family members.
Do not take the information provided here as medical advice. Always consult your doctor for more details.
How is Rett syndrome diagnosed? (Diagnosis of Rett Syndrome)
Rett syndrome occurs mostly in girls. That’s why doctors find out about this syndrome by adopting the girl’s pattern. Because this syndrome is very rare, doctors first diagnose autism spectrum disorder, cerebral palsy, metabolic disorder, and prenatal brain syndrome. Genetic testing is done in case it is not clear, on the basis of which the diagnosis of Rett syndrome is made.
How is Rett syndrome treated? (Treatment for Rett Syndrome)
There is no exact cure for Rett Syndrome. Treatment can improve the quality of life of the child. Which will have to be done continuously throughout life.
You have several options for treating Rett syndrome:
- Medical care
- Physical therapy
- Speech Therapy
- Occupational therapy
- Healthy Nutrition
- Practical therapy
- Supportive service
A therapy expert is needed to do the therapy of Rett Syndrome. Some girls learn about social behavior in school. Some problems caused by Rett syndrome are also treated with medications. At the same time, girls with Rett syndrome are able to live only up to the age of 20 years.
What are the lifestyle changes that can help me cure Rett Syndrome?
With Rett syndrome, lifestyle changes can be made to lead a normal life:
A person suffering from the syndrome should relieve his stress by talking. Social interaction will also reduce anxiety and tension.
If you take care of your child on your own at home, then you should take someone’s help. So that you can take some rest in between. Because when a child grows up with Child’s Rett Syndrome, he needs more care.
Encourage the child to talk to other family members. Apart from this, you can get help online from the International Rett Syndrome Foundation.
Apart from this, you should contact your doctor in this regard. Because only after seeing the condition, the doctor can tell you the treatment.