At the age of 2 our daughter was diagnosed with Nephrotic syndrome, She is now 9 years old. I feel it is important that we raise awareness of this condition to help find a cure and allow our children the opportunity of equality.

At the age of 2 my daughter started a nasty medicine called prednislone which has many nasty side effects, 4 relapses later and it wasnt working so the dr's decided upon Cyclophosimide which is even more nasty and potent than pred, but can only be administered for a short period of time. This drug came with weekly blood counts.  It was identified that this didnt work we started a drug called ciclsplorine, this she was on untill April 2012 with many periods of prednislone for relapsing.

When she was 4 she came into contact with chicken pox, which many think is great to get over and done with, not for a child with nephrotic syndrome. Our daughter ended up in iscolation and was there in body but not in mind or spirit and believe me she has plenty of that. Once she came throught the worst of that we believed that she would be ok, we were wrong. As a result she lost partial site, hearing and developed learning difficulties. A once confident clever little girl could no longer put pen to paper or read at all. She is still catching up now and needs support in school.

She is now 9 and after many years of medication she has developed precoscious puberty and is the size of a 12 year old, many neph parents will tell you, swelling and weight gain is a major side effect.

She is finaly pred and ciclosplorine free for the first time since she was 2 and fingers crossed we can make it through our first christmas without a relapse.

Please help us find a cure and not let our children suffer any more than they need too.

 

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