Ria Pancholi is a surviving identical twin. Since birth her mother Nina has been coping with Ria's terminal condition called microlissencephaly. | "I wouldn't say we have good days and bad days, we have good moments and bad moments." | | Nina Pancholi- Mother of Ria |
Doctors told Nina during her first pregnancy that her daughter Ria had microlissencephaly. She has spent the last three years discovering what is it. I went along to see what life is like for her. Take a look at Dharma's interview with Nina Pancholi and Ria...
Microlissencephaly is a terminal condition. Microcephaly means small head and lissencephaly means smooth brain. Nina prefers to refer to her as a medically fragile disabled child. Nina lost Ria's twin at 22 weeks and doctors said the trauma caused Ria to suffer. However they only discovered the condition once she was born.
 | | Nina and Ria Pancholi |
Physically you can see Ria's head circumference is smaller than any other baby. Her frontal brain area is heavily underdeveloped and therefore she has underdeveloped motory skills. The terminal condition also means Ria will never walk, talk or speak. Ria Suffers Ria suffers from continuous muscle spasms and vomiting, which occur three to four times daily. She is fed through what is known as a kangaroo tube, by a machine that is always attached to her. She is prone to suffer from epilepsy and pneumonia and her body is more likely to come under attack by viruses, as her immune system is weak. The endless battle It is a constant battle for Nina, everyday is a challenge and I was amazed at the level of care she gives to her daughter. She never gives up and is determined to live as normal a life as possible with Ria and her family. Nina says: "Going anywhere is like a military operation." I agree, as I witnessed her and Ria get ready to go out for a walk. For us that is a simple task but Nina has a lot to remember, as it's vital for Ria's life that nothing is forgotten or left behind.
 | | Nina and Ria go out for the day |
Ria has her own room downstairs so that the family can keep constant watch over her. It is difficult for Nina not only to look after Ria but the rest of the family as well. Hopes for an operation Nina is anxiously waiting for Ria to have a gastrostomy due sometime between May and June. This operation will pass food directly to her stomach preventing Ria from vomiting. Strength from within Textbooks say Ria will only live for two to four years and doctors say she will live no longer than three years. Ria was three-years-old in May this year. Her parents and family are overwhelmed with joy that she is doing so well. | 
