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FROM READERS: Mother writes 'my purpose in life has now been put in front of me'

Robin Friedrich shares her baby's journey with hydrocephalus in the hopes of raising awareness and encouraging research for a cure.
Friday, April 19, 2013 | 6:00 a.m. CDT; updated 3:39 p.m. CDT, Saturday, April 20, 2013
Parents Brian and Robin Friedrich smile with their son, Clayton Levi Friedrich. Clayton was born Jan. 7.

Robin Friedrich is finishing her elementary education degree at William Woods University and has lived in Columbia her entire life. 

My name is Robin Friedrich and I am a first time mom of a sweet little boy named Clayton Levi. Clayton was born on January 7, 2013 here in Columbia, Mo. at the Women and Children’s Hospital. Clayton was diagnosed with hydrocephalus when I was 20 weeks pregnant.

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Hydrocephalus is a birth defect in which the ventricles of the brain do not function properly and fluid builds around the brain causing pressure on the brain itself. The day after he was born he had brain surgery to place a shunt in order to drain the fluid, and relieve pressure. Clayton spent two weeks in the NICU and had amazing care by everyone there. While he was in the NICU, we had genetic testing done and found out Clayton has the rarest form of hydrocephalus-x linked. I had a brother who died from it at three months, so I am a carrier and passed this on to him.

As one could imagine I was devastated throughout the rest of my pregnancy and those first few weeks of his life. Although it is a very common birth defect/neurological disorder, it is rarely talked about and many do not know what it is.

My purpose in life has now been put in front of me, and it is to take a proactive stance rather than a quiet or ashamed one. I want to be the best role model I can for my son, educate as many people I can about this disorder, and strive in helping people see past the differences of others. Clayton is my heart and soul, and life without him is unthinkable.

In honor of him we are walking in the Hydrocephalus Association Walk in St. Louis, sponsored by the Children's Hospital in St. Louis on September 7, 2013. I am working hard each day to raise money for this amazing organization and educate others about Clayton and his condition. The Hydrocephalus Association is important in fundraising for people like Clayton, so research can be to be done to find a cure. Here is his team page for the Walk in September. 

This is just the beginning of my mission, and the sky is the limit for what I will do for him and this cause. I want to turn this uncommon, scary word into a term used often in hopes to find a cure someday. While we do not know how many surgeries he will need, what delays he may have, or what the future holds for our family, one thing is for sure, this mom has her miracle and he makes my life better each day.

This story is part of a section of the Missourian called From Readers, which is dedicated to your voices and your stories. We hope you'll consider sharing. Here's how. Supervising editor is Joy Mayer.


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