Mia's Story

Mia was born on September 4th 2016. She is a happy and active 6 year old girl. She has many hobbies like playing softball, riding horses and doing gymnastics.

When Mia was about 4 years old we noticed something odd about the shape of her mouth. We took her to see many doctors  trying to find an answer. From dentists all the way to plastic surgeons. It took many doctor visits, but we finally got an answer from Phoenix Children’s dermatology.

Mia has a rare condition called Parry Romberg Syndrome. It is an auto-immune disease where her immune system attacks the muscles and tissue on one side of her face. There is no explanation for the cause of it, nor is there a cure.

Eventually the shrinkage will stop, we just don’t know when that will be.

As of right now there are only ways to slow down the deterioration. Once a week we give her an injection to slow down her immune system. She also has to do infusion treatments for 3 days at a time. She takes these treatments for 3 consecutive months, hopefully only once a year.

It wasn’t easy to hear what our girl was going to go through, but she has handled it so well. She has been so tough through every doctors visit, every poke, and through the long days of traveling. We are still learning as we go, and we know she will take on any the challenges ahead. We have faith in God that he will give her the strength to get through it. Mia has already shown us how strong she is and she continues to surprise us all.

Throughout this time we have had some of the best support from family and friends. We are all in this together.