The 4th Annual Grand Rapids Strollathon for Rett Syndrome!

I was very lucky to be in attendance Sunday at the 4th Annual Grand Rapids Strollathon for Rett Syndrome! 

I had the opportunity to speak with both Nicole Mast and Marci Poley during the event.  Nicole is the Mother and Marci, the Aunt, of Makayla.  They are both a part of Makayla's dream team.   Nicole describes the disorder as Autism, Cerebral Palsy, and Parkinsons all rolled into one. Marci gets teary eyed as we discuss life expectancy and how it affects daily life in the Mast home.  Her words hit me hard as she informs me that often times RTT patients pass away in their sleep with no warning.  They have no way of knowing.  She explains that she spent a lot of time helping Nicole during her last pregnancy, as she was unable to lift and care for her daughter like she normally does. 

 I am so impressed by the strength this family has.  The determination and hope for a cure is a real thing.  It is close and I believe after my research in the last few days that it is entirely possible, but not without help.  Please consider ways that you could contribute to this cause as you read through this blog post.  Money is wonderful and very needed for research, but if you are not able to give a monetary donation, there are many other ways to contribute; time, skills, love.  The possibilities are endless.  

I was amazed at the amount of time and love everyone puts into putting this event together!  

Once everyone arrived and registered, we started on our stroll around Johnson Park.

Poor little Makayla slept through most of the walk.  Who can blame her?  It was the perfect weather for a midday nap.

 As we rounded the corner back to to the shelter, she woke up. Impeccable timing, cupcakes and princesses are on the horizon!

I've never seen so many princesses and mustaches before!  I love it!

 

There was a temporary tattoo station, manned by a professional, of course!!  

You could also get your nails done by a pro!

Waxing services unfortunately were not available : ) 

There were many items for sale, as well as a silent auction, with proceeds going directly to the cause. How cute are these hairbows! 

  I had an amazing time!  If you were unable to make it out this year, I urge you to look out for next years date!  You don't know what you are missing out on.  If you would like to sponsor this event, or have an interest in volunteering in any way please email the Grand Rapids Strollathon Chair, Nicole Mast or call 616-299-2065. 

Also, if your family or a family you know is currently suffering with Rett Syndrome, Autism, Cerebral Palsy, or ANY neurological disorder and you are interested in scheduling photography services, please contact JW Picture Studio to set up a complimentary session. 

please email the Grand Rapids Stollathon Chair, Nicole Mast, or call (616)299-2065. - See more at: http://www.strollathon.org/grand-rapids#sthash.wlxgE9WO.dpuf

please email the Grand Rapids Stollathon Chair, Nicole Mast, or call (616)299-2065. - See more at: http://www.strollathon.org/grand-rapids#sthash.wlxgE9WO.dpuf

please email the Grand Rapids Stollathon Chair, Nicole Mast, or call (616)299-2065. - See more at: http://www.strollathon.org/grand-rapids#sthash.wlxgE9WO.dpuf

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Rett Syndrome - What I didn't Know.

Since I began my photography business, I really haven't done much advertising.  A couple of months ago, I decided that a Craigslist ad couldn't hurt anything.  Not long after posting,  I was contacted by Nicole Mast, mother of Makayla who suffers from RTT.  She is also the Grand Rapids Strollathon Chair.  I was more than happy to volunteer my services to this cause.  However,  I did not know much about it.  I read a little between jobs and changing diapers.  Probably the same amount that anyone not affected by it would.  Then I showed up.  I will be honest, it's hard to feel good about yourself when you read no more than the basics on something that affects so many lives.  I am a Mother of two and I didn't understand the impact of the disorder.  My own daughter could just as easily been affected by this disorder.  Most parents have no clue what symptoms to look for.  It just attacks their family with no warning. 

Adele

Rett syndrome is primarily caused by a sporadic mutation in the MECP2 gene on the X chromosome. To read more on this visit www.rettsyndrome.org.

Makayla

In laments terms, your child can seem perfectly healthy and develop at a normal rate and then out of nowhere, with no warning, between 6-18 months your child begins to lose communication skills and use of her hands.  There are other symptoms as well.  These are just the initial ones.  I can't even imagine the heartbreak.  This progresses into periods of isolation or withdrawal, where your child may cry inconsolably.  Motor skills continue to decline, breathing problems arise.  Most individuals with RTT require maximum assistance with every aspect of daily living. 

Savannah

I challenge anyone reading this to look at your own children and imagine how helpless you would feel.  I'm by no means saying that the parents of this disorder are helpless, from what I've seen they are beyond what I would consider strong.  They are fighters and continue to hope for a cure.  They raise awareness and plan fundraisers in hopes that they than continue to fund research.  

 I was honored to have a chance stroll with them, although I will never know what it is truly like to walk in their shoes. 

Kylie

Don't know anyone with Rett Syndrome?  Not sure how you can help?  Visit www.rettsyndrome.org/get-involved to find out how! Any family reading this that is affected by Rett Syndrome and would like photography services please contact JW Picture Studio at 404-840-1957 to set up a session, free of charge. 

Savannah

 Together we can find a cure!!

 

rand Rapids Stollathon Chair, Nicole Masi

rand Rapids Stollathon Chair, Nicole Mas

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