Miracle Photo Shoot with Phelan McDermid Syndrome – Dallas Frisco Family Photographer – Me Ra Koh
This is the first time Isabella has ever looked at the camera and smiled. This was a miracle photo shoot.
As I was working on this post, Isabella’s mom and I were texting about the title. Their whole FIORIA experience continues to impact their family and our team in the most powerful ways. This is about so much more than a photo shoot with Phelan McDermid Syndrome. As you keep reading, you’ll discover it’s a miracle photo shoot. But we wanted as many parents with PMS children to find this to give them hope and encouragement. The best way to do this is to have Phelan McDermid Syndrome in the title.
It Started with an Unexpected Email
A number of months ago, I received an unexpected email. A woman wanted to enter our FIORIA Family Portrait Giveaway, but if she won she wanted to give it to her friend. When generosity is so beautiful, you know there is a deeper story.
Understanding Phelan McDermid Syndrome
Isabella, their daughter, was born with Phelan McDermid Syndrome. For her this causes global developmental delays and several disabilities, such as low-muscle tone that affects her sitting, standing and walking, as well as speech and feeding difficulties. I’ve since learned Phelan McDermid Syndrome presents differently for every child. Isabella is six years old, non-verbal and in her wheelchair or her new Grillo most the time.
I did a Discovery Call with the Mosquera’s friend who had reached out. After hearing the Mosquera’s story, I told her that if she and their friends came up with a certain amount, FIORIA would match that amount so the family could have a big, beautiful piece of wall art in their home. Their Session Fee would be covered, and mom would get to have Professional Hair & Makeup done. They did it and surprised the mom with their FIORIA Gift Certificate!
Mom’s Initial Response
I’ll never forget my first Discovery Call with Isabella’s mom. She wasn’t sure this was a good idea because Isabella is very sensory sensitive. Photo shoots have never gone well in the past. She felt very hesitant to believe this photo shoot could be a success.
I felt her words on such a deep level. I didn’t want to set them up for disappointment either. But I just knew that there was something so special about this whole thing. I told her, “There are many doubts and fears I can struggle with, but this is something I am confident I can do.” She borrowed that confidence, and we witnessed a miracle photo shoot.
Jennifer, Isabella’s mom, and I decided the two of them would come early. While Jennifer got some pampering with having her Hair & Makeup done, Isabella would have a chance to acclimate to the studio. I had so many people praying for this photo shoot. I wanted nothing more than for Isabella to feel safe and at ease.
When I heard she loves Tummy Time, I got on the floor with her and spent this wonderful, sacred time connecting at her level. I wanted her to know she is beautiful, mysterious, and such a gift to spend time with…that she didn’t need to perform or feel pressured to be anything but herself for the photo shoot.
The Greatest Gift
When it came time for the photo shoot, Isabella gave us all the greatest gift.
She let us in.
Brian and I sat and cried with her parents as we showed them the portraits later that day during their Reveal. It was like looking at one miracle after another. Isabella smiled for so many, connected with me and the camera, and blew us all away.
I remember doing a Discovery Call with her dad. I asked him to describe what he loves most about his family. “We’re happy! We like us! We’re different being white, hispanic, black, disabled…and we’re at peace. We’ve been dealt an interesting hand, but this is what God had for us. And I love us.”
There was so much grace over this whole experience. I remember thinking ahead of time to put my Sony Alpha1 camera in silent shooting mode so Isabella wouldn’t hear the clicking. But she was ready to go, and I forgot to change that setting. And it was covered.
Our Youngest, Most Resilient Rising Phoenix
A month or two before the photo shoot, several friends were praying Isabella would have a developmental breakthrough of some kind with Phelan McDermid Syndrome. Those bold, powerful prayers were answered! She started sitting up!! When her mom saw the portraits at their Reveal, she said “That’s my Rising Phoenix! She has worked so hard to be in this place of sitting up on her own. She inspires me every day.”
Her Brother’s Story
I think Jackson’s superpower is that he walks, no…he RUNS through walls.
Where some of us might see a barrier or hesitate to extend love, let alone shower others with love, Jackson runs right through as if there is no reason to wait.
We’re the JOY BRINGERS!
He tells his sister, “We’re the JOY BRINGERS! That’s our part in the family! We were meant to be together! We were made for each other! Sissy, one day when you can walk and talk, we’re going to do so many adventures!” Their mom said that Jackson always reassures her, “Sissy’s got her own language. I know what she’s saying.”
He is always reaching for her, touching her, comforting her, letting her know he is there. It is one of the most touching, moving bonds I have ever photographed.
Jackson was the unexpected gift his parents prayed for. Unable to get pregnant, they started praying about adoption. One day, a co-worker told Jennifer she was pregnant and didn’t know what to do. It didn’t take long for Jennifer and Vinnie to come back and offer to adopt.
Shortly after adopting Jackson, they became pregnant with Isabella.
“We were made for each other,” says Jackson.
In a world that is often awkward and unsure of how to be around a disabled child or adult, Jackson LEADS us all.
They Prayed for Children
Vinnie and Jennifer prayed for years that God would give them children. And their joy from having those prayers answered in the most unexpected ways is breathtaking. I wanted to capture this for them. Their story begins with their faith, and their faith carries them through.
Their Wall Arts Speaks to Them
A few days after we installed their wall art, Jennifer texted me,
“I have never noticed this dark corner of my house GLOW before, but it seems to be so this morning. I cannot wait to share with you all that God has been whispering to me through this portrait over the last 5 days!!!!! Laurene has been saying this from the start and I believe her…this is SO much bigger than a family getting their pictures taken. God is GOOD!”
Happy tears streamed down my face when I got Jennifer’s text with this photo of sweet Isabella sitting below her wall art. Being able to see the resilience of their children, their family, every day is transformational. We’ve had so many clients tell us that their wall art seems to almost speak to them, reminding them of who they are and casting vision for what is still to come.
That is the heart of what FIORIA is all about!
It’s not enough to see your resilience on your phone. You need to see it displayed in your home on a specific wall where it will catch your eye, speak to you, remind you of the truth, and reveal even more to your heart.
Do you see what I mean? This miracle photo shoot with Phelan McDermid Syndrome is about so much MORE than a disability. It’s about unexpected hope and vision for all that is to come and still possible.
Meet Jennifer in Our Next LIVE Phoenix Spotlight
Every Discovery Call I did with Jennifer was powerful! She has such profound wisdom to share and is one of the most real women you’ll ever meet. I took endless notes and found my heart reflecting on her words months later. This is the gift of wisdom. It grows hope, life and revelation even months later of hearing it.
I asked Jennifer if she’d join me for our LIVE Phoenix Spotlight. And she said “YES!”
We are going to receive the most amazing gift hearing from this beautiful woman. If you’re not a member already, join our private Facebook group “Rising Phoenixes with Me Ra Koh”. We host our LIVE Phoenix Spotlights in the group.
DATE/TIME: Tuesday, 10/26, at 12pm CST
When you request to join the group, you’ll be asked three simple questions. Make sure you answer them so we know that you’re not a bot or spammer.
CLICK HERE to request to join. (If you are reading this post after our LIVE interview with Jennifer. We keep all these inspiring Phoenix Spotlights up and available within our Facebook group. Feel free to listen to the replay.)
If you or someone you know needs supports with Phelan McDermid Syndrome, visit https://pmsf.org/. There is also a private Facebook group for families that you can request to join. Search on Facebook for Phelan-McDermid Syndrome Foundation private FB group.
Every child is different. Every family has their own story to tell. My FIORIA Team would be honored to give your family a FIORIA Experience that celebrates and captures the resilience in your child and family. If this is something you’d like to explore with us, the first step is to schedule a Discovery Call. CLICK HERE to schedule your call (https://fioria.as.me/family).
Begin Your FIORIA Experience
What challenges have you overcome? What resilience lives within you and your family? Despite all the hardships and losses, what is rising from the ashes? That is what FIORIA captures for you–the Rising Phoenix within. This sacred, heart process starts with our Signature Discovery Call.
Schedule Your First Discovery Call by Filling Out Our Contact Form. We are so excited to take you on an unforgettable journey.
still we rise, Me Ra
(Amazon affiliate links included)
Camera: Sony Alpha1: https://amzn.to/3ncGe57
Lens: Sony 24-70mm f/2.8 GM: https://amzn.to/2VvyexL
Sony High Speed SD Card: https://amzn.to/2SV8Aky
One Light: Profoto B1X: https://amzn.to/2LSuAvL
Profoto Sony Air Remote TTL-C: https://amzn.to/2LUHWI2
Modifier: Profoto Octa 254712 RFi 5ft Softbox: https://amzn.to/331w38v
HP Spectre Laptop: https://amzn.to/2SSvtp0
Tether Cable: https://amzn.to/2GGcNUm