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Tuesday, August 28, 2018

SLOS Syndrome - The Zatalokin Family Introduces Us To Their Son RIddick

We use Positively Muskegon to share the stories of those in our community who make an impact.  Sometimes they are big things, and sometimes, they are small differences.  Collectively, it's all of our efforts no matter the circumstances that make us a community and as our travels from place to place continue, we find those who are willing to share their story so others too can learn and grow, and that's the case today with the Zatalokin Family.



I fist met Corrie Zatalokin and her son Riddick a few weeks ago as I was invited out to speak to a group of your people about some of the choices in life we all make, some of the choices I made in the past which were not all that great.  Hey, part of being a recovering alcoholic is being willing to reach out and talk about it, so when I am invited I do.  Not that Corrie or Riddick were there for the message necessarily, but as we were getting ready to go, a mutual friend introduced us and said, "You know Andy, Corrie here has a story..."  So....we set it up. 

Follow Riddick's Story on Facebook
It seems Riddick was born with a genetic condition called SLOS.  It's an acronym for Smith-Lemil-Opitz Syndrome and it effects only 1 in 60,000 new born children.  In a nutshell, Riddick's body does not naturally produce cholesterol.  You might think, "Great, aren't we all fighting high cholesterol?"  Well, not exactly.  Cholesterol is our body's natural lipid that effects almost every function of the body in some way or another.  So much so, that in a condition like Riddick's the first sympton that was noticed was his inability to suck and swallow at about 2 days old.  Patients also show signs of being on the Autism Spectrum.  Some have a cleft palate, fingers and toes that are not shaped properly, sensitivity to stimulus, eye problems, pulmonary problems and more.  There isn't a lot known about this syndrome and since there are so few who live with it, awareness and treatment are difficult.  So are some of the hoops the Zatalokin family has to jump through with insurance issues for Riddick.  Like any little known condition, a family can often feel pretty isolated and that there isn't much for them to turn to.

Locally, we don't have the SLOS Clinic on every corner, so they have to travel to Maryland for a yearly visit and Riddick will be a lifelong participant in research on the syndrome so that others don't have to face the question he and his family do.  It's been a trying process for the young family as you'll hear in our talk, but it's also been one that has brought the family, their friends and relatives and hopefully our community together a little closer when we know a little more about "that which we don't know".  I can tell you, from meeting Riddick a couple of times briefly, he's all little boy.  There's a sparkle in his eye....there's a little mischief in there and he's curious and slowly opens up to new faces around him.  Take a listen to our talk and meet Riddick for yourself!



As we talked in our story.  Our family had a bit of an anomaly come along with our granddaughter.  Life on life's terms.  Like Riddick though, what's come of it has been an never ending string of miracles.  To see a kid who at one point had so many shaking their heads and wondering "what's next" break through and beat the odds....it's amazing.  Not only that, to take the hurdles they face and use them for the betterment of others...this is what true champions are made of.....and they are right here among us.  They are the mom who quits her job to make sure her son has everything he can get.  The dad who works for himself because "he can fix anything" to help make ends meet and they are the family that won't take no for an answer and fight to find the answers for their own, and others like them.  Miracles are the Zatalokin Family....and they are right here in Muskegon.  If you'd like to know more about SLOS, click on the website link below to visit.

 

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