Costello Syndrome Fundraiser — Jacksonville, Florida

In 2017, I met Sarah Holloway and got to know her and her son Joey and learned about the rare disease he had, Costello Syndrome. He is the only child in Jacksonville to have the disease, but he’s not the first in our area.

This disease is so rare and so little is known about it by doctors that more children and families may be struggling with it, undiagnosed.

Only 600 people in the world have ever been diagnosed it.

Costello Syndrome affects every part and function of the body; intellectually, developmentally, and physically. Many Costello kids look alike, because syndrome diseases often cause similar physical features. There is a 66 percent chance that Joey will get childhood cancer. One in six die before the age of ten. Which is why I’m here asking for your help!

Your Chance to Make a Difference!

January 27th is Costello Syndrome Awareness Day, and in an effort to help out, I’m reposting the original information I posted about Joey and Sarah from 2017 and creating a special offer to help benefit kids with Costello Syndrome.

Purchase a $200 gift certificate for our studio for ONLY $100. ALL proceeds will go to Costello Syndrome. Give these to friends, family, or keep them for yourself. Purchase HERE.

The Gift Certificates will be mailed to your home, so include your address in the notes when you purchase! Or email Christy@jaxphotographer.com

(Only one gift certificate may be used at a time for a session.)

Here’s a little information Costello:

From Sarah/Wear Red & Denim on Sunday

Did you know for English speaking countries the Costello syndrome rate is approximately 1 in 1.2 million people? Out of the millions of babies born each year all over the world, there are only 2 babies born with the HRAS gene.

Being a parent of a child with Costello Syndrome means knowing everything there is to know about the disease, so we are equipped with the knowledge to teach the doctors how to treat and care for our children.

It’s so rare to the area that geneticists in the area couldn’t diagnose Joey. It took 4 doctors to diagnose him.

Please help us raise aware about Costello Syndrome. This Sunday please wear red and denim in honor of Joey and his Costello Syndrome Cousins. Please take pictures and share #costellosyndrome#joeycsjourney#teamjoeydavid

First Coast News Coverage & Cake Smash

Watch the First Coast News Coverage about the Holloway family.

“Just keep swimming” is motto of families dealing with children of rare disease. Jacksonville toddler is the ONLY child in the area to have Costello Syndrome.

Hoping to raise awareness for other parents who may not know their child has it and also to raise money for this local family so they can get to a specialist without taking on debt!

Most kids do a cake smash for their first birthday; it took Joey Holloway a little longer and many tears of joy from his mother when he was finally able to hit that milestone.

From the time Joey was born Sara Holloway knew something was wrong. But doctors told her it was nothing or he was just stubborn. It took many doctor’s appointments, second opinions and car rides home in tears before Holloway got the answer to what was going on with her son, the very rare disease—Costello Syndrome.

For Joey, who is developmentally eight months delayed because of the syndrome, it means regular cancer screenings, annual MRIs, exploratory procedures and ongoing new issues.

Joey is 16 months old and has already had five surgeries, tons of exploratory procedures, and has spent around 120 days in the hospital in his short life. And while eating isn’t a big thing for most children, for Joey, it’s one more step to normalcy.

“The medical field is the only field that someone can be wrong so often and miss so many things other than meteorology, and still have a job,” Holloway says. “Since the diagnosis, I have realized that I have had to teach the doctors.”

But she hopes that will change and she has new hope with a trip to a specialist in Costello Syndrome, located at the Dupont Hospital in Delaware. The doctor there has treated 100 of the 600 known cases of Costello Syndrome. Her insurance has just approved the visit and Holloway just got word the hospital has an opening at the end of October—she was originally told it might take six months to get Joey in.

The catch? Holloway has to pay for the airfare, hotels, car, etc. Which is hard when you’re a single mom who can’t work full time because you have a special needs child.

Holloway hopes to bring awareness about the disease so other mom’s who were in her boat can find answers. In the meantime, she’s relishing in the normalcy of simple milestones like eating cake.

Video From Cake Smash & More Info

Rex, from Drawn In Media, helped create a video of the cake smash and interviewed Sarah about Costello Syndrome, that video is here.

Here’s Your Chance to Help & Get Something in Return

Purchase a $200 gift certificate for our studio for half off– ONLY $100. ALL proceeds will go to Costello Syndrome. Give these to friends, family, or keep them for yourself.  Click HERE to purchase.

Featured Vendor: Tanisha Campbell of Shades, Colors & Coils

I met Tanisha recently when she inquired about some product photography. When she came in, I immediately liked her. Not only was she young, smart, super sweet and driven, but she impressed me with what she was doing with her business.

She’s only been in business for 11 months, but her website looks professional and she was seeking out professional photographers to make sure her products looked right for her website. She was def. on the right track!

Tanisha is only 25, and not only is this her first business venture, but she’s also an active member of the military. I had to know more!

Where can people buy your products at?

Online (www.shadescolorscoils.com). Etsy is coming soon!

How did you get your start?

It actually all started on a cruise ship. I was on a cruise with my best friend and I wasn’t have the “perfect” hair day on the cruise due to the products that I was using on my hair. So the gears started turning and I decided to start thinking about the hair products I needed and then I started thinking of names for the products. Once the cruise was over and I got back to Jacksonville I went to a health store called “Grass Roots” and I began to purchase ingredients to mix to start making shampoo! And that’s how it all began.

My brand Shades, Colors, & Coils, LLC was built off diversity and individuality. I don’t want my brand to be “JUST” portrayed as a hair care line. I want everyone to recognize that this brand is based off confidence, diversity, and individuality from all walks of life! Whether you have a lot of hair or a little bit of hair or whether you’re a man or woman this brand is here for you! 

How did you come up with the name of your business?

I wanted a name that would help reflect people’s diversity and individuality. I wanted a name that everyone could be apart of. My cousin Kymeshia also played a big part with helping with the name and tying everything together. Shades- (Means to be comfortable with the color of your skin no matter how light you are or how dark you are! Be comfortable and confident in your skin! Colors- (No matter what color, race religion, or gender you are you will always be represented within this brand) Coils- (Everyone has unique hair and sometimes straight hair is always seen as the norm but no matter how curly, coily, or straight your hair is these products will benefit you!)

What product of yours can you not live without?

Hydrating Conditioning Cream (Deep Conditioner)

How do you come up with the scents?

I always loved tropical and fruity scents. So I always aim for scents with peach & mango in them (My favorite fruits) and I like soft scents like vanilla. I like these types of scents because they are not over bearing.

Do you think you’ll have a storefront soon?

Not sure about soon but that is definitely my goal in the future!

Where do you see your business in 5 or 10 years?

I see my business thriving based off the individuality and diversity my business has to offer! My brand is for all walks of life no mater what color, race, religion, or gender you are! My plan is to have my products in stores for all people to be able to purchase! I also plan on having a storefront that allows you to make your own hair products that cater to your individual needs!

(I can’t remember what happened to get her laughing, but I loved the images!)

Now, some fun questions:

What is your favorite thing to do around Jacksonville?

The beach Duhhh (:

When your family comes to town, what is something you guys always have to do while they are in town?

Spend quality family time together! Game night, cook out, shopping, and making a trip to a theme park!

What’s your favorite movie?

Menace II Society

What’s your favorite song?

Bob Marley – Is this love

What’s your favorite food?

Brown rice! Peaches and Mangos!

Favorite dessert?

Molten lava chocolate cake

Favorite restaurant?

Burger Fi (I love the veggie burgers)

Favorite place to hang out in Jacksonville?

(Downtown Jacksonville) I love the scenery, food places, and the different scenery!

What’s your current obsession?

I love to travel and see the world! I’m obsessed with seeing the world and meeting people I have never met before to learn different cultures and customs!

 

 

Southern Studios comes in for Headshots

I recently had the opportunity to photograph another set of photographers who needed updated headshots.

Brittany and Whitney own Southern Studios. They have a very light and airy style of photography. They use natural light. For this reason I wanted to photograph them on all white as well as in a more natural environment.

How long have you been in business?

    We have officially been in business since January 1, 2017! Hooray for celebrating our first year recently.

Where are you located?

    We are located in small town USA aka Keystone Heights & Starke, FL

 

How did you two come together?

    Funny story actually! Brittany contacted Whitney about photographing her son’s birth story several years ago and at the time, Whitney was only photographing them for family or close friends. Fast forward to Brittany buying a camera & contacting Whitney about showing her how to use it. We quickly realized that our personalities were seamless & we both worked extremely well together. A solid friendship was made and YES! Whitney photographed Brittany’s second child’s birth story. . unny how God works things out! 

Do  you guys have pretty similar styles? Or do you each have different things you like to photograph?

    Brittany loves weddings & birth stories. Whitney loves weddings and Senior sessions the most. Our styles are extremely similar which helps us work together so well. Light, classic & airy is what we both love and adore.

How did you come up with the name of your business?

    We knew we didn’t want to use our names and also wanted something unique. Brittany thought of ‘Southern Studios’ and we both fell in love with it.

Anything really funny ever happen while you were shooting?

    We are always laughing really! Typically at each other or with our hilarious clients. We love to have a good time.

How did you both end up shooting Canon? Why do you prefer them?

    Whitney was taught to shoot Canon & has always loved it. Never shot Nikon before but don’t really see us switching anytime soon! We love it.

What is a piece of advice you can give to newbies?

    Find what you LOVE & make it the best you know how. Never stop working and continuing to make your craft the absolute best! They say “your first 10,000 photographs are your worst..” which is so true. You can look back at your work 5 years down the road, or even 5 months & should be able to see some positive changes. 

What’s your current obsession?

    We are currently OBSESSING over us traveling to Nashville in March! We get to attend Julie Paisley’s photography workshop there for two days and couldn’t be more excited about the opportunity

Where do you see yourself in 5 years?

    Healthy & thriving! We love photography and what it has done in our lives. We are excited to see where SS will go! 

What happened to my old blog?

Last year, I hired someone off Etsy to redo my website. She hired people to do work for her and they were spammers and took down my site. When I finally got it back up, 4 years of blogs were gone, some from 2017.

Heart broken I completely went a different direction with my website.

I switched from WordPress to GoodGallery and debated even doing a blog again.

The problem with photographer blogs is, they are usually the same thing, over and over again. Go read them, “oh this is the best family ever” or “I loved working with this couple, they were so sweet.” It gets to the point where it becomes fake. And that’s not me. I love my clients. I love having fun and shooting them, but I was tired of writing the same thing over and over again.

So I thought about not doing a blog anymore. But in this world of SEO, you’re told you need one to make Google happy. So I debated.

And then, when I was in bed, supposed to be sleeping, my brain was going through business things, like it always does (during the day my brain usually goes “ching chong–oh facebook”, anyone else know what I’m talking about?). And all these ideas came to me. And one of them was to completely delete what blog I had left and start over. But don’t just feature client after client.

This time around, I want my posts to be more meaningful. I love my local community and I want to feature people, places and things I like.

So I will be interviewing and featuring small business owners, and other people I find interesting and I hope you will too. I also want to feature products and things I feel are helpful.

What does this have to do with photography or me?

Well, I’ll be showcasing business headshots and photography I take of everything I feature.

I hope you love the new blog style and the new website. And I hope you learn something cool about the businesses around you, right here in Jacksonville!

Thank you to Jackie over at American Vixen Boudoir for my new headshot.