Roona Begum was the only daughter of a poor couple, Abdul Rahman and Fatima Begum of Jirania Khola village in Tripura, who was born with a potentially fatal disease, hydrocephalus that causes cerebrospinal fluid to build on the brain.
The poor little girl with her head twice as big as normal living with her impoverished parents hit the headlines in 2013 after pictures of her rare condition photographed by an AFP photographer were published.
She was in the news again after she passed away recently in June 2017 .
Hydrocephalus is a rare condition where the cerebrospinal fluid accumulates in the brain, causing extreme swelling and builds up pressure.
It is more common among infants and older adults.
The condition is caused by overproduction, obstruction or lack of absorption of the cerebral fluid in the brain.
Pretty Roona’s plight attracted international sympathy which prompted the Fortis Memorial Research Institute, New Delhi to treat her rare condition for free since 2013 while numerous well-wishers had stepped forward offering donations, including two Norwegian students Natalie Krantz and Jonas Borchgrevink who put Roona’s photo on a crowd funding website and raised more than $60,000 .
Little Roona fought hard and her parents had her around for five and a half years but sadly, she was not able to overcome all the difficult obstacles and passed away in June 2017 in her remote village in India after complaining of breathlessness.
Over the years, the world watched a 5-year- old’s journey living with a head more than twice as big as a normal head hoping for her complete recovery and live a reasonably normal life.
Barely two months after Roona Begum expired in June 2017, another Roona Begum has been discovered in the remote village of Govajang bordering India and Myanmar under the newly created Tengnoupal district in Manipur with similar condition, similar head size and similar family background but of opposite gender.
Manipur’s Roona Begum is a 6 month old toddler identified as Seiminsang Kipgen, whom his parents fondly call Mimin, who suffers the same Hydrocephalus which causes extreme swelling of the head which his mother discovered for the first time when the little boy attained one month.
Govajang village is located around 3 Kms from the border town of Moreh in the border area of India and Myanmar.
There are around 25-30 houses in the village with a population of not more than 300 and the villagers have no main source of livelihood, mainly depending on daily labour.
The daily wage is approximately Rs 250 .
There is no pucca road connecting the village.
The only road connecting the village with the border town Moreh is a muddy road where Shaktiman and diesel auto are the only vehicles which can ply on the road.
The rare condition of little Mimin came to light when Genhison WhatsApp group along with this journalist from Kangpokpi visited him on Friday, August 4 at his native village.
The three member team of Genhison WhatsApp group was led by its group creator Robert Hekai Kipgen who donated a sum of Rs 20,000/- to the poor family.
The rest of Mimin’s body cannot keep up with his head’s growth.
He cannot crawl, sit up or roll over, and the skin of his head has stretched so much that it has pulled his eyelids over his eyes and forced his eyes to go deep into their sockets making it impossible for him to see properly.
Born on India’s Republic Day, on January 26, 2017, in the impoverished big family of Lhunkhomang Kipgen and Nengneithem Kipgen, he is the youngest sibling among six children.
At birth (CS) Seiminsang alias Mimin Kipgen was healthy enough to weigh 4 Kg.
Her eyes filled with tears, Mimin mother Nengneithem Kipgen narrated that when the poor little boy attained 1 month she took him to a nearby dispensary for immunization and came to know that the little boy weighed 9 Kg which astonished her.
She said, “I had all the other children in normal delivery but Mimin was delivered through caesarean and my initial thought that my child will change our world came true, but like this.”
Day-by- day, as his head started growing bigger he would just lie in bed and tears always rolled down from his eyes, recalled the mother and added that it became very difficult for them to carry him anywhere.
“Five days after immunization, I took him to Moreh hospital and his weight had shockingly increased to 11 Kgs,” said the mother wiping her tears.
Little Mimin now weighs 15 Kgs.
She also said that they have taken him to the hospital several times in Moreh and Tamu in Myanmar but the doctors have advised them to take him to a better-equipped hospital for his further treatment which is beyond them.
The child’s father Lhunkhomang Kipgen, who earns less than Rs 500 a day which is barely enough to feed his family, said, “We are very poor and we are not in a position to arrange the treatment.
“My son must be in a lot of pain because his head is swelling and so heavy but I can see him smiling sometimes which relieves me for a moment”, said the 43 year old Lhunkhomang Kipgen, who lives in a wooden plank hut type house with his family while looking at his son playing innocently with his hands .
The father recalled that someone told him that the common treatment of his son will involve the surgical insertion of a mechanism to drain the accumulated fluid from the brain which could cost a huge amount of money and added, “what can an under matriculate labourer like me who earns not more than Rs 500 a day do.”
Hugging her six months old son while breastfeeding him and patting his inflated skull, Nengneithem Kipgen said in a muffled voice, “I want him to live healthy and grow up educated with a bright future as both of us are no less than illiterate and I don’t want him to be like us”.
The Republic Day boy with his oversized head has unsurprisingly caught the eyes of many and his mother said that the attention is sometimes embarrassing.
Some unfeeling people have also compared him to an alien, which hurts, said the mother.
Putting up a brave front, the mother said that it feels really good to see Mimin wandering around which makes him look handsome and happy, though in fact, he might be in extreme pain.
With help from Manipur Government, Government of India, well-wishers, humble and generous big hospitals, individuals, etc.
Manipur’s Roona Begum’s future can be changed and the poor family’s belief in a ‘Miracle’ could happen only with the help of the Governments and generous people from across the globe.
Source: The Sangai Express