Ash

I love to share about Ash!

I had a normal pregnancy and Ash was born on his due date in October of 2013. We did not know that anything was wrong until at one week he had lost too much weight, and we noticed his facial palsy.

He was admitted on and off, underwent a failed supraglottoplasty, was put on an NG tube for his failing feeds, and at 11. 5 weeks received his trach and g-tube. Two days after his trach was the first time he ever smiled (being able to breathe is so nice!). We still had no diagnosis until a geneticist at home submitted us into a clinical trial six hours away. Two trips and six months later, we finally got our diagnosis of CHARGE. Ash was almost 2.5 years old.

No doctors in the city we live in had heard of CHARGE. We had already begun traveling four hours away to another children’s hospital for better service, but eventually were running out of options there as well. By chance, in a Facebook group, I learned of the CHARGE Clinic at Cincinnati Children’s and in December of 2017, we made our first trip 12 hours away from home. But lucky for us, we had a home waiting for us in the Ronald McDonald House.

It was just before Christmas, and everything was wonderful. We were able to set aside our worries and apprehensions about being so far away from home, meeting new doctors, running new tests, getting new answers. Ash was able to get away from the sterile hospital environment, and a boring hotel, and was surrounded by warmth, fun, and love. He got to be there when Santa visited the House!

Ash is about to turn 10, and we’ve made a total of six trips to Cincinnati and have been blessed to stay at the House for four of them. Our family loves the Ronald McDonald House because when we are there, we feel a part of a bigger family. We are taken care of and provided for by the House. Yes, our basic needs of shelter and food are taken care of, but more than that: our emotional needs are met. We can leave our worries at the door and just be a family.

Thank you, Ronald McDonald House Charities of Greater Cincinnati. You mean so much to our family. We hope to see you soon for our next visit.

Stacie, Ash’s mom