April 1, 2016

Luca – a very special little model

This journey started back in 2009, very shortly after I moved to the Hudson Valley, when Luca’s parents, Melissa and Mark, reached out to me to photograph their engagement session at Vanderbilt Mansion in Hyde Park and wedding photography at The Links at Union Vale in Lagrangeville. I got to know them, as I try to with all of my clients, and learned that they had struggled with conceiving. On their wedding day I arrived at the house to photograph Melissa getting ready and she told me that she had recently learned she was pregnant! We hugged and cried together and I couldn’t have been happier for them. It’s been almost 7 years and they now have 4 children, the youngest being Luca.

Children's photography in the Hudson Valley NY of Luca Schneider - gastroparesis

I was teaching a one on one photography basics class recently and my ‘student’ had a goal of taking better photos of her 1 year old granddaughter. I spent the afternoon teaching her about the different functions of her camera and what they do, we practiced a lot and then it was time for some real life experience. I needed a model and I couldn’t think of anyone more deserving of a free session than Luca. I could only see one problem with this – Luca suffers from chronic illness and has good days and bad days… I was really hoping we would catch him on a good day (I hope that one day they will all be good days).

cute baby boy photos outside in the Hudson Valley NY

When they arrived, Melissa said that Luca was having a pretty good day but had fallen asleep in the car. He didn’t wake up in the happiest of moods but at least he wasn’t in pain.

Hudson Valley NY kids photography - Luca - gastroparesis - invisible disease

With Luca’s chronic illness, his Mom is always by his side. Unfortunately, this little guy’s health doesn’t allow him get out much unless it’s to go to the doctor or hospital. He takes quite a while to warm up, especially if he has just woken up! Thankfully we did manage to catch a few little smiles with Mom’s help! A guy after my own heart – he loves leaves too! 😉

kid's photos by Cornwall NY professional photographer in the Hudson Valley

baby boy photos of Luca by professional photographer Autumn Photography in the Hudson Valley - photo studio located in Cornwall NY

I asked Luca’s Mom, Melissa, if she would share some of his story – here it is in her own words:

 

“Luca became very sick when he was 2 months old. Each time he had formula, he would throw up. He would have episodes of inconsolable crying, arching and flailing and at times turn blue around his lips. His belly was always bloated and I knew he was suffering. We were told he was lactose intolerant and that he had reflux, but I knew they were wrong. I knew there was something wrong with my son. After being hospitalized twice in Morgan Stanley children’s hospital and tested from head to toe, given a feeding tube because he couldn’t keep anything down and kept losing weight, we finally got an answer. At 6 months old we were told they believed he had a motility disorder of delayed gastric emptying, know as gastroparesis. He was given medication to help pass food through his digestive tract and needed 2oz feedings every hour in order for him to keep it down. This worked for a month, but then he flared up. We were sent to Mass General Hospital in Boston. Boston has the top motility specialists. Luca went through more tests; gastric emptying scan which confirmed the gastroparesis, another endoscopy, and a colonoscopy which discovered that his sphincter muscle was completely shut and couldn’t pass anything through, so he had to receive a Botox injection. This worked for 6 months, and in November of this year, things have returned to him suffering. Luca’s belly is always bloated or distended. He cannot pass bowels normally, and the only food he can tolerate is eggs, Greek yogurt, prune and pear juice. The doctors believe that Luca now has what’s called pseudo obstruction motility disorder and will be returning to Morgan Stanley in the next two weeks to get an anorectal manometry to pinpoint which muscles in the gi tract aren’t working specifically. We will also be going back to Boston in the middle of April for another endoscopy and colonoscopy and possibly another Botox injection. There is NO cure for these motility disorders. Luca has good days and bad days, and he is starving to eat food, but his body can’t tolerate it. His muscles just don’t work to push everything through, they are “paralyzed” and he continues to suffer in excruciating pain. All we can do is try and give him a normal life as much as we can, and hope that one day they will find a cure. He is my hero and when he’s feeling good, he has the biggest smile and personality. Never judge someone for how they look on the outside, when you have no idea what is happening on the inside.

 

I ask that you please keep them in your thoughts and prayers and if you are so inclined, you can donate to help with Luca’s growing medical expenses at www.gofundme.com/lucajohn.

 

A spur of the moment shot of Luca and his amazing mom Melissa. <3

“You never know how strong you are until being strong is the only choice you have.”

Thank you, Melissa and Luca! <3

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