Hello all,

In the 22 months since Stevie was born, she has proved to us she is one in a million. I would love to share a little of her journey with you.

Stevie Sledge was born with a rare duplication of her chromosome region 16q11.2-q21. There are approximately 10 known cases in the world. It took months of testing to find a diagnosis, and now her journey is just beginning. Stevie is looking at a long road of ongoing physical and behavioral therapies, as well as operations. Next month, Stevie is scheduled to undergo surgery, in San Diego, for bilateral hip dislocation. An orthopedic surgeon will create new bilateral hip sockets, one hip at a time. This will have their family relocated for quite some time, and a long 12-week recovery for our sweet girl.

The rarity of this also comes with a very broad and vague outlook on what to expect for Stevie’s future. As you can probably imagine, Stevie is having to undergo an abundance of testing in order to fully understand this disorder and how it will affect her physically, mentally and emotionally. Kelsey and Spencer have been in the throes trying to manage her care, track her various doctors, ensure she’s attending weekly physical therapy, continue the constant efforts needed to work with insurance companies, keep their son Jack on track, while making sure Stevie’s life remains as unaffected as possible. Their journey is constantly changing and requires their flexibility, positivity, faith and unwavering support from their friends and family. Pushing doctors to examine Stevie’s rare condition and making sure she is receiving the proper care is their daily mission.

To scratch the surface, she has already endured multiple head CT scans, MRIs, helmet therapy, extensive genetic testing, SMO therapy (supramalleolar orthosis), sleep and EEG studies, weekly therapy and beyond. Stevie has been receiving bi-weekly speech and physical therapy and was just approved by Early Childhood Intervention of Houston for extra support of a behavioral therapist and occupational therapist twice a month. She has done amazing and continues to make daily strides! She is stronger than ever at her young age of 22 months.

We are watching her grow and allowing her to guide us along the way. As you can imagine, this has required blind faith from Kelsey, Spencer and family as her diagnosis has very little information surrounding the proper care and what to expect of her development. We have listened to doctors tell us what they think she will be able to do, and what they think she may never be able to do. But we have watched Stevie create her own story and we are watching her truly SHINE. She will write her own story, and we will support her every step of the way. Most often, parents are teaching their children. But it has been clear since the very beginning, that Stevie is teaching us. She is teaching us the importance of patience, understanding, caring, determination and most importantly, faith.

I am creating this page to bring awareness to Stevie and her diagnosis. I am hoping to relieve the burden of extra expenses that may not be covered through insurance, and continue to support the Sledge family through this life-long journey. We are so excited for this next step of her story and cannot wait to see the many more obstacles that Stevie overcomes. We know that with the help of her friends and family, this will be possible! If you feel called to give, any amount will help relieve the burden of cost and allow The Sledges to continue focusing on their children.