Lovely Lilly Anna
I had the pleasure of spending a beautiful spring morning with the lovely Lilly Anna and her family. They love being together as a family, and doing as many activities as they can together with their three children. Lilly Anna’s siblings love to go to the trampoline parks, or fun activity centers in the local area, and Lilly Anna would love to do those activities too, but her chronic illnesses prevent her from doing everything she would love to do. As her mom says “She looks like a very typical child, but she has so much pain. What looks like misbehavior isn’t misbehavior. This causes a lot of extra stress for us when we are out in public.” She does enjoy going to the movies, and doing arts and craft projects with family and friends though!
Lilly Anna suffers from about 8 different chronic illnesses/diseases. Her main struggle is with something called idiopathic infantile pyoderma gangrenosum. This is a chronic illness that creates lesions all over (inside and outside) of your body and the pain, doctors say, is worse than that of a burn victim.
Her mom says, “Her disease started when she was 9 months old and was extremely traumatic for us. It started out with a pimple on her leg and continued with lesions all over her body. These went into her muscles as well. There are only a possible 19 people in the world who have this but it could possibly be a disease that is the first of its kind in the world. They aren’t even sure yet. It is a very lonely position to be in.”
Some of the other chronic illnesses that Lilly Anna suffers from are juvenile inflammatory arthritis, neuropathic pain from her lesions, and chronic vomiting syndrome, among a few. Lilly Anna only makes it to her school about half of the year, and does the rest of her schooling at home with her mom, from their computer because of her pain.
I asked her mom what it meant to her to have portraits taken and she said, “Having a daughter with a cronich illness, I haven’t been able to go back to work full time. She’s on medicade and the worry is always ‘how will we get through’. She does have a full time nanny because we never know if she will be able to go to school or not because of her pain. Money is something that I’m always prioritizing. Family portraits isn’t something that we can have because it’s a luxury. Having a tight family unit is something we prioritize as well. We talk a lot about what our family means so this is huge for us. I can’t express what it means for us to have this memory of us being here together. The whole experience and your kindness…it’s so good.”
I truly enjoyed our morning together. The family was so much fun to photograph! They interacted so well together and it’s those little special moments that are so important in life to capture. I’m so glad I got to meet them all and share this special time with them. It takes the most patient, warm, and wonderful parents to raise children like Lilly Anna and they are doing an amazing job. Their positive attitudes inspire me.
Thank you so much to the two business woman who became sponsors for this session because of their investments. Lynn Paxson from Oasis Senior Advisors and Kris Perrone from the new Fab and Boujee Boutique in Hockessin both participated in the “Businesses Give Back” weekend and because of their investment, we were able to photograph Lilly Anna and her family. They are two amazing business woman and I’m so lucky to have met them as well. Please check them out if you get the chance!
If you’d love custom portraits and would be excited about automatically becoming a sponsor because of your investment, contact me for information about custom portraiture, 302-300-7569 or ana@photosbyexpressions.com Thank you!