Aydia is an inspiring girl full to the brim with courage and grit! We are honored she is the second Carve Out Courage award recipient. You can read her remarkable story as written by her mom below as well as view the award video.
Aydia is our first born child. When Aydia was born, she was almost immediately diagnosed with hip dysplasia. I wasn’t too shocked since I had it as well as an infant and it’s most common in first born girls with a family history. Hers was fairly severe though. She had dysplasia in both hips which essentially means that her hip sockets were too shallow and could dislocate easily. She wore several braces as an infant, in the hopes that would correct it, but at age of almost four, she still hadn’t improved enough. The decision was made to undergo surgery.
Surgery for her was quite an event. It took about 6 hours and a 5 night hospital stay. Then was wheelchair bound for 6 weeks and after had to relearn how to walk with a walker. Aydia had another surgery about a year following her first to remove hardware from her legs. About a year after that, she went under again for a revision of her scars on her legs. They are all about six inches long. She still deals with discomfort in her hips since her muscles have scar tissue that makes them very tight.
One of the causes of Aydia’s hip dysplasia, besides the genetic component, is that she has hyper flexibility caused by Ehlers-Danlos Syndrome. She’s lucky as some people have heart issues with this but hers is fairly minor and just affects her muscle tone. Unfortunately that muscle tone makes development fairly difficult. We learned she had severe scoliosis about a year ago. She currently wears a brace a night for sleeping and will possibly be moving to 22-23 hours a day brace wearing if her curve progresses. These are in attempts to avoid surgery. She goes to physical therapy almost weekly and sees a chiropractor as well.
Aydia has been through a lot in her life and unfortunately struggles with anxiety sometimes. This progressed a lot last school year when the accumulation of the scoliosis diagnosis and a rough and stressful situation at school caused her anxiety to peak. She started pulling her hair, not knowing she was doing it, in response to the stress and anxiety. She was officially diagnosed with trichotillomania over the summer and has lost roughly 40-50% of her hair. We’re currently fighting that with hat wearing and special wristbands that vibrate when she does the behavior.
If all that wasn’t enough, the poor girl was diagnosed with Hashimotos this summer as well. We came upon this when we did some blood tests to make sure there was nothing else going on with the hair loss. Hashimotos is an autoimmune disease that attacks the thyroid. Her doctor’s recommendation was to go strict gluten free so her whole diet had to change. That was probably the hardest thing for Aydia so far. There have been days where tears have flowed because of not being able to eat certain things she misses. We’re hoping that when we redo the blood tests that the diet will show a difference in her tests so she doesn’t have to go on thyroid medication at such a young age.
Through all this, Aydia has shown us so much courage and resilience. She has had times when the struggle gets hard and she breaks down, but most people who know her would say she’s one of the most vibrant and joyful kids they have met. She has thrown herself into the arts and theatre. She LOVES being on stage. She has an amazing voice and won the Pine County Fair talent contest and went onto the state fair semifinals where she came in second. She has been in multiple musicals and plays and has been the lead in several productions now. She also is very active with her girl scout troop and loves helping others. She loves school this year and has a teacher who has brought the joy out of her even more this year than I’ve ever seen before. Watching her at school with her classmates blows me away. One of the toughest kids in the class describes her as the kindest kid in 5th grade. That shows me how much she is loved by everyone. She truly is very kind to everyone she knows. Little kids just flock to her and she’s so excited to take the babysitting class in March so she can start babysitting. We’re so proud to be her parents and can’t wait to see what this kid is going to do in life. She’s going to do big things with her big heart and with all of her adversity in her past she’ll be able to overcome any obstacle in her way.
We were not able to award Aydia in person unfortunately but did put together this video which was shared at an all school assembly with several hundred students. Aydia was moved to tears. She is a great example of resilience and it was very cool to share this with her peers! You rock, Aydia! Click HERE to view the award video.