Nitu is eleven years old. She lives in Shayestanagor in Habiganj (a region within Bangladesh). While most 11-year-old children are full of energy, Nitu must stay at home. Nitu lives with a rare condition known as progeria, which causes rapid aging. Keep reading to learn more about Nitu’s story, or follow the original story here.
Nitu became severely ill roughly three months after being born. According to her father Kamrul Hasan, a local worker, her hands, feet, and face became very dry. The skin of her entire body was affected. Her father describes Nitu’s feet as beginning to take on the appearance of an old person’s feet. The family sought treatment for their daughter in many different places within their region. Nothing seemed to help.
Progeria, also referred to as Hutchinson-Gilford progeria syndrome, is a rare genetic condition which causes premature aging. Those affected by progeria may appear normal at birth but often fail to thrive after infancy. Signs of old age are the most noticeable symptoms.
Later on, progeria may cause hardening of arteries, and heart problems. Children with progeria rarely live through their early teens.
Click here to learn more about progeria.
No treatment currently exists for progeria. Some research shows promise in a cancer drug that may help treat symptoms, but it is still undergoing testing and approval by the United States Food and Drug Aministration. Thus far, nothing has been very effective at treating Nitu’s condition. All that can be done is to help manage the symptoms.
Lowering cholesterol is an important part of the process. Preventing blood clots is also critical. To this effect, low doses of aspirin may be taken daily. Growth hormone may also help to correct for height and weight issues.
These are only some of the reasons Nitu mostly stays at home. Her mother, Jusna Begum, describes how the family has attempted anything they can think of to help her. The medical costs, however, have been enormous. Nearly all of the family savings went towards Nitu’s treatment. They have very little left.
A local social worker noticed others saying negative things about Nitu one day and decided to help the family. She brought Nitu to her home and found a way to enroll her in a school nearby that serves children with disabilities. Habiganj’s deputy commissioner also announced support for the family. The district administration, he says, will do anything in its power to help Nitu and her family. He encourages wealthy citizens to do the same.
Nitu’s family continues to stand by their daughter and appeal for help. Their goal is that Nitu may live a longer life than expected. More than that, they want to see their daughter live as comfortably as possible and with dignity.
