The MSK Project has been created and funds raised will be used to create a documentary with some of the patients affected by this debilitating disease as well as create awareness in the medical community, to petition a bill in Washington D.C., Obtain massive government funding to help those affected now and future generations, to develop research in the area of possible prevention and one day . . . With your help, A CURE!
I am the mother of a daughter who had Medullary Sponge Kidney Disease, better known as MSK. My daughter Nicole was diagnosed nine years ago after the birth of her second child. Doctors say it is a congenital birth defect and is not necessarily known that you may have it until late teens or early twenties, some cases have been found in young children, male and female. MSK is a progressive disease that causes kidney stones, bladder and kidney infections, blood in the urine and cysts in the dilating ducts. It;s also known, the nephrons in the kidneys diagnosed with MSK are half the size of a normal kidney causing the reduction of urine flow through the kidneys causing natural mineral buildup which is believed to most likely be the major cause of the formation of the ongoing kidney stones.
My daughter Nicole, had spent many years dealing with this disease and had been in the hospital more times than we can count as well as, numerous and very radical surgeries, severe pain meds on a daily basis and had even knocked on deaths door several times before passing away recently from complications of her illness.
As a parent you can't help but wonder if it was something you did during their developing stages inutero or was it just the luck of the draw? It is terrifying and devastating to watch your child go through this and know that at that very moment there is nothing you can do, but you'd give your very last breath to give them a healthy life. No parent should ever have to bury their child and it is her legacy to her Spongie family that I continue the project in her honor.
With much love, we thank you and we'll see you on the hill!
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