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Fight rare neuro-immune disorders. Together.
September 28th, 2008 was a day that forever changed our lives. The day started out like any normal Sunday. My oldest daughter was visiting us as she usually does. It was a normal fall weekend; we were working outside building a new shed for our backyard and doing some normal cleanup. The time came for our youngest daughter, Gabby, to take a nap. We put her down, kicking and screaming like any normal two-year old, and then we decided to go to the store while the kids stayed at home. We were gone for about an hour and a half. About the time we were pulling back up to the house, our oldest called us to tell us that something was wrong with Gabby. We walked into the house to see her struggling to stand upright and unable to use her arms and hands.
Our nearest hospital was only about ten minutes away so we took her there. They ran some standard tests: CT, bloodwork, etc. They could not find anything wrong. They decided to transfer her to Dayton Children’s to try and get her under the care of pediatric specialists. It was a Sunday evening so it took some time to get the transport. We arrived at Dayton Children’s around dinner time and they admitted her to the PICU almost immediately. Needless to say, the attending physicians were not there. This meant that she did not receive any form of specialized care until the next morning.
During that first night, her lungs started to collapse due to the lack of muscle control. The attending physicians actually arrived early that Monday morning because they were aware of her case. Almost immediately, they started her on steroids. They also had to intubate her and get her on a ventilator. Within a couple of hours, they had a working diagnosis of Transverse Myelitis, hence the reason for starting the steroids. This was the moment when reality started to smack us in the face that our little girl was terribly ill. They performed an MRI on her later that day after they got her stabilized, which confirmed the TM. They also started discussing with us some of the treatment options that they researched on TM. And so, our lives just took a MAJOR twist. A new journey had begun.
We had been there a few days and she was still intubated. One night we were asleep and all of a sudden there was a big fuss happening with her, she had tongued out her intubation tube. The next night, at exactly the same time, she proceeded to do the same thing. Our little girl was starting to make her BIG comeback. It was at this point that they approached us about performing a tracheostomy on her because they couldn’t allow her to keep on the intubation tube. It was a big shock to us, but we understood that it was what was best for her. A couple of weeks went by and although she was getting more head control, she still was not getting any other function back. They decided it was time to look at sending her to a rehab facility. It took us a while but finally Riley Children’s in Indianapolis had a bed. So, after six weeks of living at Dayton Children’s, we were on our way to live at Riley. It was six weeks of driving an hour and a half to take turns staying with her while one of us stayed here to take care of our son and the house. But, during that time, Gabby got stronger. They also helped us become more accustomed to how to take care of her. The week before Christmas, we got the best present of all… SHE WAS HOME.
The years have gone by. Gabby is still fully dependent on us for her care, but she has also developed a big Independent attitude. We encourage her to do everything she can for herself. We moved into a new home last year. Her room is bigger than ours. She loves to sit in it watching her TV shows while playing on her iPad, using a mouth stick to hold her stylus. Her new school has gone above and beyond to help her. All of her care has transitioned to Cincinnati Children’s with Dr. Allen DeSena. Eight years may not seem like a long time, but to us, it has been an eternity. She will always be our “Little Gabby”. But she has become such an inspiration for all of us.
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