Medically Inspired Reading About Challenging Life Experiences (M.I.R.A.C.L.E.) Online Books is designed to build a community of health awareness. We interview parents/guardians who understand the challenges of dealing with a child who has a medical illness, condition or circumstance and manages to cope with day-to-day activities. Although Scoliosis awareness ended in June, we want to share this special story. We hope that other parents and families will be educated and inspired and strengthened with the stories we share.
- How many children do you have? What are their names and ages?
I have 3 children. Anthony 7, Cheyenne 5 and Cienna 2 years old.
- Which child is ill? Tell us about their illness.
Anthony and Cheyenne both have Antley Bixler Syndrome, severe Scoliosis and bi-lateral hip dislocation. Cheyenne also has severe Lung Disease, right diaphragm that’s paralyzed and CPAP dependent during sleep.
- Tell us about their personalities?
Cheyenne is extremely shy, an observer if you will. She keeps to herself, but she just has this smile that lights up a room. Anthony is very outgoing, with a larger than life attitude. He’s very independent and loves trying new things. They both are fighters and NEVER once has said Why me? They are so brave and inspire so many.
- Share how this situation has affected you and your family. How and what has been your biggest challenge?
It affects our family in so many ways; hospital stays, financially, out of town appointments that we just can’t afford, stress from being away from my other kiddos during hospital stays, Cheyenne and/or Anthony missing school when they have surgery.
- What challenges have you overcome?
Anthony has overcome 15 operations, his last one July 2014; Cheyenne has fought for her life since she was born and had her 1st surgery last year due to major complications. Ultimately, there are just too many obstacles to list.
- When and how did you explain to Anthony and Cheyenne about their illnesses?
I haven’t quite gotten there yet. They do know they are Special and a little different from other kids but they are treated normal.
- To other parents dealing with the same or similar illness, what advice would you share?
No matter what let your child know that they are loved and support them 100% in whatever they choose to do.
- What would you like to tell us that we did not ask you?
My children have a support page at https://www.facebook.com/theadventurousjourney.
Thank you for sharing your story with us Crystal, your journey displays that of courage, confidence and endurance and I am sure others are encouraged as they read your story. For any readers interested in knowing more about Crystal’s journey, please visit https://www.facebook.com/theadventurousjourney.
If you know of any other parents/guardians we should feature in upcoming topics, please have them email us at ContactUs@miracleonlinebooks.com.