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. 

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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.

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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!

Groups Coming Together For The World Games at No More Sidelines July 27th

Everyone looks for the ideal fit.  How do you seem to manage to accomplish more than one thing when quite often, it seems that everyone is getting pulled in so many different directions and so many different agendas are "the most important"?  Well, believe it or not, it happens and when the puzzle pieces all come together just the right way, really great things happen on more than one level, and change happens for good. 

Click Here for west MI Works

Let's start off with the place.  The Folkert Community Hub.  The Home of No More Sidelines.  They have an expansive area in the back of the building which used to be a fabrication area for prototype machines when the building was owned by General Dynamics.  When No More Sidelines took ownership, however, that gigantic area became the gym.  It's also used as an expansive expo center from time to time and during the day, any time of the year, kids who frequent the building know it as a playground where they can shoot hoops, ride bikes, play games and burn off energy.  To hold the "World Games" at the gym at the Folkert Community Hub makes perfect sense!  Trophy's were all out, competition stations were all centered and the work force at each game was ready in their "Live United" shirts to assist and keep track of how each participant did. 

Visit the DTE Energy Foundation Online

Did he say United Way? Yes, he did.  This came about with collaboration of the United Way of the Lakeshore, Michigan Works and The DTE Energy Foundation.  Remember how we talked about the pieces all coming together?  It goes like this.  In the summer, area students ages 15-18 go to work helping out at local non profits after they apply and go through the hiring process at Michigan Works.  The DTE Energy Foundation funds the program so the students can get the much needs real life work experience as well as getting some more hands on deck in the busy months for our area non profits.  The students earn a paycheck while learning real life, and essential soft skills that will benefit them as they move on out of school and into the work force.  Their week consists of working Monday through Thursday and Friday's they meet up to discuss and debrief as to how the week went and what they learned.  This particular Friday, instead of the recap, up to 50 of the students volunteered to put on the games for the kids of No More Sidelines.  A remarkable, multi-leveled approach to getting many things accomplished by incredible agencies dedicated to making the future of Muskegon, better for all.

Just as the games were getting underway, I was joined by Jana Routt and Kathy Rohlman.  Jana is with the United Way and Kathy is with Michigan Works and we talked about how all of this comes together to benefit so many people!  Take a listen!

Collaborative efforts.  Amazing how much can get done, and what an impact they can have when people genuinely work to make things happen.  Students learned and earned.  Kids had a fun day of competition and our community was strengthened by connections being made in both the working world and the service sector.  This is the kind of thing at Positively Muskegon we LOVE to be a part of telling you about.  Thanks to Jana for the invite out to cover the story and to West Michigan Works, The DTE Energy Foundation and of course, The Folkert Community Hub and kids and families of No More Sidelines.  This is how the foundation for a next generation is laid.  If you'd like to know more about the United Way, click on their logo below!

Muskegon Pregnancy Services Welcomes Dr. Alveda King October 4th

It's a ways out, but getting the word out about an event that's as big as this, well, it might take a little advance planning. So...here we are.  Muskegon Pregnancy Services is welcoming in the niece of Dr. Martin Luther King Jr. and is the Pastoral Associate and Director of Civil Rights for the Unborn.  She will be speaking at the Frauenthal Center on October 14th.  The topic will be "Redeeming the Dream - Defending the Unborn"



Muskegon Pregnancy Services has been around for 34 years now.  From their website, - "Muskegon Pregnancy Services is a relational organization that leads with love, grace, and compassion.  As a client of MPS, you are precious and valued and we are here for you first.  We want you to know, you are not alone. This is a safe place and confidential environment for you to share your feelings, fears, and dreams.  Our compassionate, non-judgmental care and support will help you in your time of need and will give you hope for the future. We know, when all is said and done, ultimately it is Your Choice, Your Body, Your Future but we would like to empower you with accurate information so that you do not look back on this time of need and wished you knew more information. You will not receive any pressure-just caring advice.  We will mentor to the well-being of the whole person emotionally, physically, and spiritually."

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As part of their work, they are bringing in Dr. King to talk about how she sees the Pro Life movement as a continuation of the Civil Rights movement her uncle started so many years ago.  She will discuss her experiences with the subject and as an opening to the evening local students will have a chance to deliver their essay that they write sponsored by Youth for Truth and Life.  Not too much up on essay's?  Well, good news!  Youth for Truth and Life will be holding a workshop Friday July 6th at Fricano's on Muskegon Lake.  Doors will open at 1:30 and the workshops will get underway at 2.  The first will be "The Art of Persuasive Writing" followed by "The Art of Public Speaking".  After the seminars, you can enjoy delicious Fricano's pizza for $5 bucks!  The seminars will be hosted by Dr. Paul Jehle.  There will be some cash prizes involved for the essay contest so why not get a little head start on the competition by enjoying the seminars and learning a little about how to do something better?

Learn about Youth for Truth and Life Online

I was able to sit down with Debbie LaNore and Arline Helms to talk all about this weeks events and a lead up to Dr. King's arrival in Muskegon in October.  Take a listen to our chat from the deck at Fricano's and learn about this two part event.

It's an important message and an important event.  If you'd like to know more about Dr. King's appearance in Muskegon you can click on the photo below to visit the event page and get your tickets or maybe you'd like to be a part of the private dinner before the event?  The details for that are there too!  Many thanks to Debbie and Arlene for taking a few minutes to talk and save the date for October 4th at the Frauenthal!

Muskegon Rockstock Celebrates it's 10th Anniversary July 3rd and 4th at Heritage Landing

It's been a decade of supporting local music and spreading some good cheer around town.  Yes, believe it or not, the little Hackley Park band jam that was set up all those years ago to give local bands, and local music fans a chance to enjoy some music out in the open and free of the "must be 21" to enter sign. 

Click Here to Follow Rockstock on Facebook

It also gave local bands a chance to bring their music to a larger crowd than just those who shun the light and head to the clubs and as Rockstock grew, a new location and a little bigger attitude came along.  Not too big..but healthy growth.

July 3rd and 4th 2018 will be the Return of this local grass roots festival.  Great music, plenty of food and beverage and of course, Muskegon's biggest and best fireworks display.  Rockstock will be turning 10 with style while keeping true to it's roots of giving the local bands a chance at the spot light and bringing in some of the best regional entertainment as well.  Kidstock will be back with a hand from Kangaroo Palace in Muskegon with lots to do for the kids.  Giant inflatable bounce houses and activities a magician will be on hand there will be face painting, a "build a buddy" station where kids can pick out and build their own plush toy.  Last year a separate wristband was required for the Kidstock area, this year, it's included in the price of the $5 admission for kids.

Wait....did you just read $5 admission for kids?  Yes, you did.  It's $5 for everyone.  It's an affordable way to come out and have some fun and it won't break the bank.  Plus, it's a community based event and the proceeds to to benefit organizations like No More Sidelines and Special Olympics.  You know your buck will be going to a greater good if you come down for the fun.  There will be ice cold Budweiser products on hand, there will be plenty of things to eat and of course, on the 4th you'll want to be there early so you can plant your blanket and chairs down for what will rival any fireworks show in Michigan.  Nearly 25 minutes of explosive and brilliant fireworks out over Muskegon Lake from the beautiful surroundings of Heritage landing.

I was able to catch up with Brandon Baskin, the organizer of the event for the last 10 years.  He talk about how he and his very small team of folks all come together to put this on and how it's grown from the small day in the park to the way we celebrate the 4th here in Muskegon.  Take a listen to out chat below.

A labor of love and a give back to the people of Muskegon.  It's a big endeavor to put these kinds of things on and as we talked in the video, as things have come and gone over the years in Muskegon, it seems to me that some one always finds a way to pick up the pieces and keep something going.  We are a roll up your sleeves kind of town and we get to work to make things happen.  Make sure you support this great event and head down to Heritage Landing July 3rd and 4th for Rockstock year 10!  We'll see you there!!  To visit the event's official website, click on the image below.