Riley Champion: Natalie Holmes

I had the wonderful opportunity to work with Riley Children's Hospital back in September, to photograph this BEAUTIFUL young lady, as she was nominated - and selected - as a Riley Champion! Each year, several special children who show courage and selfless dedication to others through philanthropic efforts are selected to serve as Riley Champions, and this young lady right here is ABSOLUTELY a champion, through and through!

Meet BEAUTIFUL Natalie. She has a mitochondrial disorder, Ehlers Danlos Syndrome, Chiari malformation, syringobulbia, and just a few short months ago, she had her 5th brain surgery. She's currently a junior at John Adams and I can't express what a wonderful young lady she is. Not to mention, how amazing her momma is too! It's no wonder where she gets her awesomeness! :)

I just wanted to share a few things about Natalie that will knock your socks off with how amazing she is ...

* Natalie has participated in several Dance Marathons including those held at St. Mary’s, local high schools, and the family dance marathon at the Colt’s Complex.

* Natalie has been an inspiration to many in her community. She has become a mentor and friend for many kids who have similar disorders. She has traveled to meet with others who have been diagnosed with similar disorders who have felt lonely because they have never met others like them. She has close friends that she has worked with to educate others about the disorders she has, including one who has a wish to make a movie reflecting their friendship, which is titled “Rina’s Magic Bracelet”. {and she is only 16!!!}

* She has attended mitochondrial, feeding tube and Chiari conferences to learn more and share with her friends to help improve their quality of life.

* Just before her last surgery, in July, she went to Washington D.C. She met the Department of Justice while in Indiana, and they invited her to sit on a panel for them to advocate for better in home services and options. This resulted in her cause being taken to the head of the Department of Justice and a meeting with him to advocate for these services. And no surprise here that she convinced him! She went on to meet with senators and representatives about why Medicaid coverage is so critical. All of this she did while trying to navigate D.C. and finding ways to make things wheelchair accessible. She knew she was facing a big surgery when she got home and still pushed through while battling a number of different symptoms.

* Natalie has advocated locally within service systems and nationally to champion the healthcare needs to effect changes that improve coverage. {how amazing, right?!}

* Natalie is a gracious and compassionate peer to others. She and her family offer support to other patients and families through online communities and visiting the hospital to deliver treat bags.

NATALIE is a fighter, and despite the obstacles she's faced, she has never given up. She is a TRUE CHAMPION. Honored to know her. Congratulations beautiful girl!

Emily AllisonComment