About us

I am Narmada Raj, wife to a very caring and supportive husband Raj. Mother of 2 lovely little princesses. My oldest one is Mithilya, who is full of energy, very creative, kindhearted and stubborn little girl. My youngest one is Mahiya. She is a adorable little princess who looks exactly like her older sister as a baby, but has many health issues, which is the reason why I am starting this blog. I want to document her rough journey of life and I pray that her life gets easier with time.

Mahiya born July 2010, is affected by a rare metabolic disorder called Citrullinemia. Citrullinemia is a type of urea cycle disorder. She was diagnosed at birth. She breaks down the protein in her food but cannot get rid of the waste product of protein metabolism, because she is missing an enzyme to complete her urea cycle. The waste product is ammonia which is toxic to the brain. At very high levels it causes irreversible damage to the brain cells. It is a very rare disorder, affecting roughly 1 in 60,000. How unlucky Mahiya is to be the one. It is a genetic disorder. Apparently me and my husband are carriers but not affected. With each pregnancy we have 25 % chance of having a baby with this disorder. NO MORE BABIES!! This disorder has totally changed our life.

More info about this disorder at http://www.nucdf.org/ucd.htm.

Mahiya was diagnosed with hyper tropic cardio myopathy at 7 months.

We are from South India. We are in the US for about 8 years now. Work brought us here. We were planing to go back to India in couple of years. But after Mahiya's birth everything changed. There is no treatment in India for citrullinemia, as far as I know.