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.
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| 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.
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| 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.
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| 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.
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.
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| Kylie |
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| Savannah |
Together we can find a cure!!
rand Rapids Stollathon Chair, Nicole Masi
rand Rapids Stollathon Chair, Nicole Mas
