Woman once stood 5’9 tall has shrunken to 4 feet after one in a million disease hits her
An Indian mother is desperately waiting for the treatment of her young daughter who once stood 5’9 tall but has shrunken to just a 4 feet body.
Roma Gulati, 22, suffers from an acute case of Rickets that has caused her bones to painfully shrink and left her bedridden.
She has been suffering from the ‘one in a billion’ condition for nearly a decade.
Roma has extremely weak bones and cannot even move on her own as most of the joints in her body are deformed.
She can barely use her hands and depend on her mother for everything.
Her widowed mother Gauri Gulati, 46, says the treatment is possible but she cannot afford it.
She has exhausted all her savings on her medicines and is now hoping for donations for the treatment that will last at least five years long and would cost a massive £63,000.
In a painful voice, Gauri said: “What has fallen on our child? She was the tallest girl among her friends but see, now she is a just a bundle of flesh and blood.
“She was a very healthy and playful girl but this disease has snatched her life.
“All she can do now is move her left hand. None of her body parts are strong enough to be moved on own even though they are functioning well.
“We have spent £3000 so far in her treatment but nothing has helped.”
Roma has been getting periodic treatment at 2nd Life Nature Cure in Hyderabad in southern India where doctors are trying a combination of physiotherapy massages, acupuncture and supplements to improve her condition.
Dr Naresh, Acupuncturist and Electro Homeopathy specialist, said: “Her case is one in a million. Rickets struck people sometimes in childhood and sometimes later stage in life but with Roma, she got it was about to hit puberty.
“Her immunity is very weak and she has deficiency of calcium absorption. Because of this her body has shrunken and her internal organs are affected.
“We have put her on calcium supplements and provide her acupuncture and other naturopathy and Ayurvedic medicines.
“Her condition is so severe that she needs to continue her treatment for as long as five years.
“She needs to hospitalised here and undergo various treatment procedures from various specialists such as stem cell therapy, physiotherapy, acupuncture, message therapy and Ayurvedic nutritional medicines.
“However, the treatment is expensive and her mother cannot afford it delaying her treatment and worsening her condition.”
Roma was only 12 years old when she first complained her mother of severe back pain. The same time around her father Deep Singh Gulati met with an accident.
Due to cash crunch, Gauri took her daughter to local doctors who diagnosed her with weak nerves and prescribed medicines for the same.
However, Roma’s condition started worsening over the years despite taking the medications. From a tall girl who was active in sports, Roma started bending.
She cried of severe pain in her joints and increasingly became weak and fragile. She was then diagnosed with an extremely rare kind of Rickets.
In 2008, her father suffered a huge setback in timber business and suffered a loss of a whopping £2,30,000. Unable to bear the pain, Deep Singh suffered a a massive heart attack that took his life.
Gauri said: “My life was torn apart. My husband was gone, we had no money left and my daughter was struggling with a rare disease I had never known about.”
Gauri left her in-laws house and moved to Hyderabad where she is raising Roma and her son Adhitya with the help of her brother-in-law.
She said: “We get Rs 20,000 every month as our share from my in-laws but that is not enough to make ends meet and for Roma’s treatment.
“A simple physiotherapy cost Rs 400 a day. Doctors have estimated daily expenses on her treatment around £30. We have no money for that.”
Despite the painful disease, Roma is like any young girl full of life.
She helps her mother with chopping vegetables and mixing batter for pancakes with just one hand. She spends her days watching cooking videos on her tablet and fine-tuning her mother’s cooking.
Roma is strong-willed and believes one day she will be back on her toes and start her own cooking show.
Gauri said: “She is an extremely positive girl. Even if we lose faith that we may not see her on her feet again, she does not give up on her hope.”
“She tells me that she is hopeful of treatment and getting better soon. She wants to study and start working to help run the family.”
Gauri is now hoping to get help from good Samaritans and government to help her daughter getting the life-saving treatment as she fears the condition if left untreated can prove fatal for Roma.
She said: “She has already suffered liver damage because of the shrinking. I now fear of something wrong happening to her. If we get no help in time, we might lose her.”