A while back I applied to be a photographer with an amazing organization named Inspiration Through Art. Inspiration Through Art gives families that have children with life threatening/altering illnesses the opportunity for professional images and the chance to tell their story and inspire others. And, gratefully, I was chosen to be an affiliated photographer. Many months have passed without the opportunity to serve ITA but I finally received my first call in February. Sullivan’s mom, Rachel, was interested in having me capture images of her baby boy on one of their 300 mile round trip visits to Vanderbilt Children’s Medical Center. I was excited to do my first session for Inspiration Through Art but more importantly, I couldn’t wait to meet Sullivan and his family.
Sullivan had his first seizure shortly after his birth and is still undergoing treatment to determine the best course of action to manage his seizures. He also has craniosynostosis and underwent surgery last year for that with the same doctor as my sweet buddy, Wes, did last year as well. The two boys actually got to meet today at our session and the moms bonded a bit with all of their ‘cranio’ talk and head comparisions. Two women, instantly bonded, yet again reminded that they are not alone. And that’s exactly the purpose of Inspiration Through Art. We give these beautiful children and their strong families the chance to tell their story and provide hope to others who are walking in similar shoes.
Here’s a little of Sullivan’s story in his Mom’s words:
Our son, Sullivan, was diagnosed with epilepsy at birth (6/3/11) and craniosynostosis when he was 2 months old. Sullivan started having rapid and intense seizures within 24 hours of being born. He spent the first 2 weeks of his life in the Vanderbilt NICU while they tried to get the seizures under control. The doctors told us they could not tell us what kind of life Sullivan would have due to the damage the seizures in the first 3 days of his life had caused, but we went home hopeful that our beautiful little boy would be just fine. Within weeks of being discharged the seizures started becoming more frequent again. Sullivan’s medications were increased and once again life was “normal” .. except something didn’t seem right about his head. It was very elongated and the changes in positioning suggested by his PCP and physical therapist were doing nothing to change it. By the time Sullivan was 2 months old there was a visible and tangible ridge running the length of his head. When he was 3 months old he was diagnosed with craniosynostosis which is a big word that means the soft spots in his skull had closed prematurely and were causing restricted growth of his brain and skull. Surgery was our only answer. Sullivan had a cranial facial reconstruction surgery at 5 months old. He is now 11 months old and doing great. Most people would never know his troubles if not for the scar on his head that runs from ear to ear. His seizures are under control and he is healing great from his surgery. He has a few minor developmental delays but his prognosis at this point is very positive. He is silly and wonderful and we are thankful for him each and every day!
I am honored to introduce 11 month old Sullivan…
and his amazing parents, Rachel and Matthew…
Thank you so much, Rachel & Matthew, for bringing your most adorable little guy to visit me. I am completely over the moon with him!!! He has such a big smile and bright eyes! I loved all of the kisses he blew me and his infectious personality, even if he told me “no” lots and lots (just kidding!!) You are so blessed!! Thanks for inspiring others with Sullivan’s story and Happy Early Birthday, Sullivan!
To keep up with Sullivan, you can follow him here:
a little twist on my parting shot (taken by Rachel, for her blog. Eek! What was she thinking asking AFTER her session was over when I was working in 80+ degree weather!?! 😀 It was my pleasure to get a chance to hold this sweet boy):