Fourteen years ago I was a young mother of my first child. After an emergency c-section, Kegan was taken to Akron Children’s Hospital for respiratory problems.
It was very scary being so far away from him, but my nurse line kept me up to date on everything that was going on.
We were released a week later and Kegan has been healthy ever since.
In 2010 I had my second son Braxton. When I was told he was being transported to Akron Children’s I was upset, but I knew he was in good hands.
When I was released to be with him, I was surprised by the new rooms available for NICU parents. This was a blessing after a c-section to be so close and still have the ability to rest and nurse. He was released after a week and is such an amazing, healthy and intelligent 2 year old.
Neviene was born in 2011. My last child and my only girl. She too went by Air Bear to Akron Children’s for respiratory distress.
Our stay was a bit longer and lasted 21 days. She went through many tests for Down Syndrome, Trisomy, etc., and all came back negative. A year later we returned to the Genetic Center and a Microarray showed that she has a rare chromosome syndrome called Kleefstra (9q34 chromosome deletion).
This was Akron Children’s second diagnosis of Kleefstra and the first was not long before us. With less than 250 diagnosed cases in the world we have had to face many challenges.
As we continue our journey through life with a rare chromosome disorder the one thing that keeps us strong is knowing that the Genetic Center always knows who we are when I call. They continue to lead us in finding more information and every department that we have seen since has been wonderful.
Nev is the most beautiful and amazing blessing. She has made her mark already on so many people.
My family is here because of you. I hold a memory of each child in the NICU. We are now building many more memories with each visit.
We drive over an hour each way for every visit and we know that it’s worth every mile. Thank you so much for your continued care, quality of staff and services, and all the little things you do to make each visit easier.