These children look years older because of a rare skin disorder
Nature has its own way of dealing with some very difficult situations and some times, humans tend to get the worst of the nature’s wrath. It may be in the form of a calamity, a natural disaster or in form of an incurable disease.
A pair of siblings in a city in India suffers from one such incurable disease that has made life very difficult for them. The financial condition of their parents have made it impossible for them to get proper treatment and for now, they have become the attraction of their city, all because their condition makes them look much older than they really are.
Check out the story for yourself.
1 The two children
The two children are- 7 year old Anjali Kumar and her 18 months old brother Keshav Kumar. They are the children of Shatrughan Rajak and reside in Ranchi, Jharkhand, India. Their claim to fame is that the siblings are known as the ‘Benjamin Button’ kids.
The siblings got major attention as the genetic condition they suffer from is incurable in India and their father cannot afford treatment in foreign nations. The condition was made famous by the Hollywood movie ‘The Curious Case of Benjamin Button’, which is based on a story by F. Scott Fitzgerald, in which a man’s aging process is reversed and as he ages, he becomes younger and younger.
Anjali says, “I know I’m different from others my age. I have a different kind of face, a different body, different everything. I have a swollen face while the rest of the world looks normal. People always stare at me and pass bad comments. “
2 The condition
The children are said to be suffering from a rare form of Progeria and also from Cutis Laxa, a rare skin disorder.
In Cutis Laxa, the connective tissues in the skin become weak and the skin loses its elasticity. This makes the skin hang loosely and the person looks like having aged many years. Keshav Kumar is just 18 months old and his sister Anjali is just 7 years old and yet they look much older than their natural age. Normally the skin returns to its original state when stretched or pulled. But in this condition, the skin loses its ability to return to that tight, original state and hangs loosely.
The condition is so rare, that in countries like India, it is considered incurable as only a handful of individuals in the world have been diagnosed with this condition.
3 Sufferings of children
Both the siblings have looks of much aged people. The skin disorder has made them objects of curiosity in their city. Their father makes INR 4,500 per month and spends around INR 500 per month on homeopathic medicines as he is unable to afford the allopathic treatment for his children. His third daughter is a normal child.
Apart from suffering from this condition, both the siblings also suffer from joint pains and dislocations of joints when they do strenuous things. This happens due to the ligaments and muscles that keep the joints in place, becoming weak due to the genetic disorder. The genetic disorder means that a single mistake in genetic code makes the body produce more quantity of a particular protein known as progerin. It allows the cells to break down easily.
Huge quantities of this protein in skin and other muscles, means that the skin and ligaments become lose easily and bodies of children age at an accelerated rate.
4 Reaction from other people
The father of the siblings says that the people from their community call them old and that breaks their hearts. The local doctors have said that only thing that can cure them is treatment overseas as in India, the disease is incurable.
Anjali, who goes to a school along with her elder sister Shilpi, who is normal, says that children call her with all sorts of names and she feels very bad when such things happen. The young girl says that she wants to be treated like normal kids and that she should be accepted the way she is. She continues, “I really wish I could look as pretty as my sister. My parents hope that I will be okay one day but it makes me feel sad that my family suffers and feel embarrassed because of me. My only wish is for a cure. I want to live a long pain free life.”
For now, the siblings and their parents are hoping for some help, so that they can afford the costly treatment and until then they continue with medicines to ease the pain and uncomfortable feeling felt by both Anjali and Keshav.