The Story of Adelyn
Adelyn Troutman is a very happy, funny, energetic baby who loves being outside, going to the park, burying herself in sand and playing ball with her dog. She is the youngest of three, to her brother Ethan and sister Alexa.
Adelyn was born on October 27th 2015 via a planned C-section. Everything until that day was fine and we had no indication of what was coming for us. Seconds after she was delivered we knew something was really wrong. No one was saying a word to each other or to us, then seconds later several more people rushed in the room, put her in a basinet and quickly left with her. My husband followed, as I laid on the operating table helpless... trying to figure out what was happening. A few hours later I was able to finally go and see my baby girl, as she was laying in the crib in critical condition. She was born very anemic with a hemoglobin count of 3.2 (normal is 10.5-14) and the doctors were trying to figure out what the cause of that was.
The next week was the most difficult week in our lives as we were told several times that she might not survive. At that time we still had not heard our baby cry or were even able to hold her. We stared at her through the glass day and night and hoped that everything will be ok. Numerous tests were getting done, and still at that point we had no answers of what was making our baby so sick and whether or not she was going to make it. Another week had gone by and still nothing, at that point we still had no answers but at least she was now in stable condition. The doctors were running out of ideas as of what it was they were dealing with while another week went by. Every test they ran was coming back normal, and so was every scan. So they told us, we might never know what caused it all but as long as she was fine then it really doesn't matter so they sent us home.
Everything was fine until December 31st... Addy had gotten more and more pale as the weeks since her discharge had gone by. We decided to take her to the doctor and have her checked out. As soon as they even looked at her, they knew something wasn't good. They quickly checked her count again, and in shock they told us the number. She was now at a 2.3, it was lower than when she was born. They couldn't believe their eyes. How was she still there, how was she still alive? They rushed us to the hospital and sent us right up to the PICU. They gave her 2 units of blood and started running more tests and that is where we met her lifesaving doctor. After a few days there, we finally had all the questions answered and we had a diagnosis. She has Diamond Blackfan Anemia. DBA is a very rare blood disorder that prohibits the body from making blood and requires regular blood transfusions to keep the person alive. And there was Addy, who became a regular at the children's hospital while getting her lifesaving blood.
After a while that became our normal. We were there every 4 weeks spending the day at the hospital while she got her unit. Months went by, sometimes she made her next appointment and sometimes she didn't. Those times we ended up making a trip to the ER so she could get her much needed blood.
Since there is no cure for DBA, Adelyn will be blood transfusion dependent for the rest of her life. Research is continuing to evolve and our hope is that one day there will be a cure for Adelyn and everyone else inflicted with DBA.
How You Can Help:
Support Research: Help support the DBA Foundation by donating toward research. The foundation provides resources for families, but more importantly, funds research efforts to find a cure for DBA. Click here to learn more
Donate Blood: Since Adelyn's method of treatment is blood transfusions every 3 to 4 weeks, we encourange people to go out and donate blood when they are able. We also host two blood drives a year which have became huge events for everyone to show their support. You can go online to find a donation center or blood drive near you by clicking here. When donating, you may use the sponsor code "Adelyn" to do it in her honor. Please visit the Events page to learn about upcoming transfusion dates as well as upcoming blood drives and to view photos from past events.
For up to date information, please follow her facebook page at: Facebook.com/Adelynscure