First of all, I can’t stress enough that my intentions for going online was simply to goof around with Adalia, and do something she wanted to do. You see, it’s hard for us to go outside like a normal family. Not only does it take a tank of sunscreen to properly protect Adalia, but our neighborhood isn’t exactly Pleasantville, it you get what I’m saying.
So playing around on the internet was something that we could do safely, or so I thought. I never imagined that we would get so much attention. That’s why I think it’s so important for me to let everyone know (because you seem to like hearing from us) about Adalia’s reality, and what it is like to watch your child suffer with this very difficult disease.
How I found out that Adalia had Progeria
When Adalia was born we didn’t see anything different in her other than some strange skin thickness on her torso … my mother told me she was OK, that it would go away … my mom tells me that about everything!
Two months went by, and we started noticing that she wasn’t gaining any weight. The doctors became worried, and so was I. We had no idea what was the problem, and the doctors told me to go to a geneticist. Being a first-time mother, I didn’t know what that was (and telling you this story brings back all of those same feelings). We went to the doctor where they ran blood tests.
She was about 3-4 months old now. The doctor took a look at her, and gave me some names of things that could be wrong with her – one of them being Progeria. At that moment, my heart broke. I didn’t know what any of it meant, all I knew was that something was different about Adalia.
I rushed to the library because at the time I was only 18, and I didn’t have a car or a cell phone. When I got to the library I researched Progeria, and two other disorders. The symptoms I read about for Progeria were: diminished body fat and muscle; hardening and tightening of the skin on the trunk and extremities; as well as hair loss.
Everything that I read was true about my baby, and that is a feeling that will make you feel like you could throw-up your heart. I was so hurt, so scared, and I didn’t know why this was happening.
All I knew at the time was that my baby was different, but she couldn’t be like these kids. I was terrified, and I didn’t know what to do. When the doctor finally called me, and announced that she had the results, I went to the office alone, and received the news that would change my life. My baby had Progeria.
I did a lot of crying, and a lot of questioning. I was in denial for a long time. Then, as time went on, I noticed that the doctors were right. She started changing, losing her hair, losing weight. Her joints started to stiffen, and the worst part, she was aging. I kept Adalia away from people for as long as I could because when I would go out, people would just stare. I even had people from high school talking about how ugly my baby was.
My heart was shattered into so many pieces, and I just wanted to be alone with my daughter. I secluded myself from everyone … even at times from my own family. Even though I lived at home, I never really associated with anyone. I felt much more comfortable being in my room, playing and listening to music with my baby girl.