Uniquely You

Hello friends! Some of you know but most of you may not that I have a strong desire to expand my photography impact. I would love to begin to offer a photography service that focuses on the needs of families and children with special needs. I absolutely love that you and your child have a beautiful story to tell and would love to help you tell that story through photographs; whether that be through a sensory sensitive experience, through capturing moments during special events like fundraisers for awareness, or everyday life moments. Many of you have daily battles and scares that no one is even aware of. Many of you have a desire to know other families with special needs that may just understand the struggles that you are going through. My goal is showcase these beautiful needs that make you and/or your child unique and to raise awareness. I want to be a voice and I want to help tell YOUR story. If you are interested please let me know so we can discuss what would be easiest and best suited for you and your family.

Hello, I’m Grayson!

I have Prader-Willi Syndrome. PWS is a complex genetic disorder caused by the lack of several genes on one of my two chromosome 15’s. My Mommy and Daddy think I have an infectious smile (whatever that means), but sometimes taking pictures can be overwhelming for me. See, Prader-Willi Syndrome makes me feel like I’m starving 24/7, so sometimes scheduling pictures around my rigid meal schedule can be hard. Being so hungry makes me really cranky and I don’t always feel like smiling because I can’t stop thinking about eating. On top of having a “special tummy”, I have sensory processing difficulties. When we take pictures, certain lighting, textures, poses, or physical contact agitates me. Even though emotions run high on picture days, my friend Heidi always knows just want to do to make me giggle. She is kind and funny! She helps distract me when I’m having a hard time. After she takes my picture, I always like to go home and find my toy camera so I can pretend I’m catching smiles too! (Thank you to Grayson's Mommy for submitting his story)

My name is Collins.

I have Trisomy 21 and a Complete Atrioventricular Canal Defect. I was monitored by a cardiologist and neonatologist weekly throughout my pregnancy but we still weren’t 100% sure what to expect health wise once I was born. There was a team of probably 15 specialist in the delivery room to access me once I was born and to be there just in case they were needed further. I had a high bilirubin when I was born and spent 5 days in Centerpoint NICU under bili lights and then an additional 7 days at home on a bili bed. I was then admitted to Children’s Mercy at 2 weeks old due to being lethargic and not gaining weight. They diagnosed me with failure to thrive and adjusted my calorie intake and also input an ng tube for anything I didn’t consume by mouth. I spent 9 days at Children’s. Once we arrived home I was doing much better and consuming most of what I needed by mouth and was gaining weight consistently so we shortly got to take the ng tube out. I see physical therapy and occupational therapy once a week. I had home health visits twice a week and as of now have cardiology appointments once a month. I failed my hearing test at birth so we also have a follow up with audiology to see what my hearing may be. I have a total of 2 holes in my heart. I am expected to have open heart surgery within the next few months at children’s but have to prove I am growing and eating well before they will perform the surgery. (Thank you to Collins' Mommy for submitting her story)

I hope you have learned something new from this post and I hope you continue to follow this journey with us. We will also be updating you all on the journey of these awesome children. I am so blessed to be able to photograph them to help tell their story through my lens <3