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.

 

Save the Date - Roosevelt Park Day September 8th - Taste of the Trucks 2

Last year, it was all a new endeavor.  What stood for years has slowly kind of dwindled and what was had become what could have been another memory when it came to Roosevelt Park Day.  Traditionally, it was celebrated on the 3rd Saturday in August, but as time marched on and new events popped up and the dynamics of so many things changed, it came down to evolve or come to an end, so the committee behind Roosevelt Park Day took a risk and changed course.


For a first year event, it seemed that it was a smart turn too.  The small festival had lost money the last couple of years where it was traditionally held on Broadway Avenue.  The "good old days" where there was a Las Vegas Tent and a street filled with things to do had seen so many changes that it had become just another beer tent.  Combine that with some miserable weather and the recipe didn't make for sustainability.  Pack it up, let's move it.

Roosevelt Park Day Event on Facebook

Breaking some traditions and changing the date, well, it wasn't exactly an easy decision, but we have this beautiful community center, a stunning park, plenty of green grass and endless ideas of how to bring people together and celebrate the small community.  We started the search for things you couldn't find in Roosevelt Park....mostly food!  Food trucks to be specific.  Great tastes, unique flavors and cuisine you might have to travel all the way to Detroit for otherwise.  Let's add in some free kids activities.  Kangaroo Palace brought out inflatable fun, the local 4-H club brought out a petting zoo with cool animals kids could interact with.  Plenty of face painting, police and fire trucks to see.  All of those will be back this year and Lewis' Farm Market will be bringing down their nearly world famous candy cannon for a blast off at 5 pm.  There will be also be plenty of live entertainment.  The Mona Shores Fiddlers will get things started, Natchez Trace will provide some enjoyable acoustic classic rock in the afternoon and then Yard Sale Underwear will cap off the evening with people enjoy the beer garden.  Pigeon Hill will be doing a special Roosevelt Park brew for the occasion.  The day begins with a delicious pancake breakfast put on by Trinity Lutheran Church, it will be held at the Community Center for a donation.  Then comes the parade which will lead to the opening of the food and arts and crafts vendors and a day filled with for for everyone!  You are cordially invited and please, tell some friends to come join us for this great day in Roosevelt Park.

I sat down with City Manager Jared Olson to talk about how last years event went, how we're working to improve this years and what you can expect from Roosevelt Park Day Taste of the Trucks 2 on September 8th right in the heart of Roosevelt Park.  Take a listen.

It's going to be a great time and if you are interested in being a food vendor or maybe having a display of your arts, crafts or small home business....we still have room for ya!  Click on the link below to visit the Roosevelt Park page to get signed up for a spot.  If you are just looking for a way to spend an enjoyable afternoon with great food, plenty of things for kids do do and see, a couple of cold ones and outstanding entertainment, come to Roosevelt Park Day Taste of the Trucks 2!  We'll look forward to welcoming everyone in on September 8th for an awesome day filled with community and family fun!

 

Classic Car Show at Arts and Drafts August 18th at Ross Park in Norton Shores

As Summer dwindles we all look for those final few events to gather up at and be a part of.  There are still a few neighborhood festivals.  We've got the Michigan Irish Music Festival yet to come, we've got Roosevelt Park Day coming up and August 18th you can check out Arts and Drafts in Norton Shores at Ross Park with a lot of fun activities going on including a classic car show.  Jon Cox is the guy behind the car show at Arts and Drafts!



I've known Jon a while.  He's a classic car enthusiast and likes to travel to different shows in his ride.  He's a fan of the camaraderie, he's a fan of the sparkle and shine.  He likes the setting and even the friendly competition among fellow car mavens.  For Ross Park though, he gets to be the show boss.  He promotes the show, organizes the event the day of and arranges all the trophies, dash plaques, gift bags etc.  He also helps spread the word about the event and lucky for us, he got a hold of me to help get the word out. 

Arts and Wheels Car Show on Facebook

Of course, you can have a car show any old place, but why not add a little purpose to it?  That's being done too.  If you come out to the car show to participate, it's a $10 spot to enter.  If you're coming out to just stroll, you can make a donation to Kids Food Basket which serves 1200 kids a night in Muskegon that would otherwise go home to no dinner.  It's so hard to believe that in 2018 kids and families go home to food insecurity like they do, but it happens...and it happens in homes you would least expect it.  Parents are often working a couple of jobs, kids are home sometimes to fend for themselves and a meal is often hard to come by.  Kids Food Basket makes sure that they have a protein, like a sandwich, a fresh fruit and a healthy snack. 

There are plenty of other events at Arts and Drafts.  There is a 5k going on.  Plenty of kids activities.  Live music featuring the likes of Refurbished, Yard Sale Underwear, West Side Soul Surfers, The Ericka Scherry Band and Onager.  Drafts....yes, you guessed it.  A beverage tent and as the title infers, there is plenty of artisan shopping opportunities with crafters and vendors coming from all over. 

But back to Jon and the car show.    It's in a beautiful setting and it will be a great day to enjoy some classic cars and good company.  I met up with Jon at Ross Park to talk about his replica Gazelle.  Take a listen to our chat!

Great time, great place and a great cause!  Head out to Shores and give them some love at Arts and Drafts.  Bring out the classic car or just bring the kids for some fun.  We like to celebrate all of our neighborhoods around Muskegon and if a cold one is involved....all the better.   For the complete schedule of events, click on the Arts and Drafts logo below to visit the official website.

The Ginka Memorial Softball Tournament August 8th at Ross Park with the Norton Shores PD

As a community, we were devastated at the news that we'd lost Officer John Ginka to a car accident a year and a half ago.  It was something that gripped the entire area that such a beloved member of the law enforcement community and family guy could be gone so quickly leaving so many wondering why and how they would go on.  But from all accounts, John was the kind of guy who would have wanted something good to come of it, and, it did.



The law enforcement community as well as friends and neighbors all rallied together to put on a softball tournament at Ross Park to help raise a few bucks for the family John left behind.  It also gave the community a chance to heal a little and come together to do what we all do best in Muskegon, pitch in to help a great cause and...yes, even have a little fin doing it.  There was plenty to do outside of watching the softball games.  There were kids activities, a dunk tank..which I found out was plenty cold, lots of great food and camaraderie and it was all based on an at will donation basis.  No set costs, just give what you can and be a part of helping to lift up a family who needed all of us to look after them.

Visit the NSPD Facebook Page

It was a big enough hit, and did enough good that everyone saw fit to make it happen again this year and to extend that helping hand to another fallen hero's family.  This year, it's to help the family of Army Sgt. Mathew Tallman who was lost to a helicopter crash in Iraq in August of 2007.  Sgt. Tallman left behind a wife and 2 kids, both who attend Mona Shores.  One will be in 8th grade this year and one in 12th.  This years event will go to help their college funds.  There will be LOTS of things for kids to do.  See police cars and fire trucks up close...face painting, bounce houses, helicopters.  The dunk tank is back and there will be plenty of food for the at will donation once again.  The softball action will be hot and the competition will be lively as it can be all with the purpose of helping someone out in the wake of a terrible loss.  It's really what community is built on.

I met up with Sarah Trombly and Scott VanWylen at the Norton Shores Police Department to talk about last years event.  How John is being remembered and what to expect this year as we once again come together to be a part of a miracle in the making for a local family.  Take a listen.

This is an incredible endeavor going on, put on by so many dedicated friends who want to see something good come out of a tragedy.  Year one was tough, everyone was numb due to the circumstances.  Time heals all wounds however and as the precedent was set, in the wake of a tragedy...something real began and now extends to help more.  We see it time and time again here in the Muskegon area.  It's just how we work.  Norton Shores is celebrating it's 50th anniversary this year.  There is lots more to come so stay tuned to Positively Muskegon and The Muskegon Channel for more details on their celebration!  To visit the Norton Shores Arts and Drafts events page, click on the logo below!