Team Adalia Rose
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There is beauty in everything,
if you know where to look.

This blog is dedicated to sharing the story of Adalia, her family, and her inspirational life.

We’re so pleased that Adalia Rose is featured in an article at Gawker.com. The story, written by Camille Dodero and titled “The Princess and the Trolls: The Heartrending Legend of Adalia Rose, the Most Reviled Six-Year-Old Girl on the Internet,” chronicles Adalia and her family’s battle against internet trolls. It will take more than a moment to read, but it’s well worth  the time.

You can read the story by clicking this link.

Earlier this week, Yvonne Nava of KVUE News in Austin interviewed Adalia and me about the art show and auction happening tomorrow night to benefit the Progeria Research Foundation. If you haven’t seen the interview, we’ve posted it on Adalia’s Facebook page. I’m not going to lie, the experience was fun for both Adalia and me … but I was super nervous!

Adalia, on the other hand, was right in her element; she is such a character, I just don’t know where she gets this stuff! She charmed the folks at KVUE so much that they gave her a special gift at the end of the interview – a tiara and a wand! Big thanks to Yvonne Nava and everyone at KVUE for a wonderful experience!

Of course, we didn’t just appear on TV to see which one of us looks better – definitely Adalia by the way. We were promoting the upcoming art show and auction organized by our good friends at Xibit Productions here in Austin, Texas. All proceeds from the art auction will go to the Progeria Research Foundation. If you haven’t heard of the great work that PRF does, I beg you to go to their website and become acquainted. They are making great strides in finding a cure for not just Progeria, but maybe aging in general.

The art auction will be silent, so there won’t be any rambling auctioneers to talk over! Instead, each of the independent artists will set a starting price for their work (to recoup the costs of framing and matting their work), and anything bid over the starting price, as well as the money for admission, will go directly to Progeria Research. In some cases, the art may start at a $0 starting price. There will also be food, fashion, music, beverages, photography, great people and even Adalia at the event!

Please come and show your support for local artists, as much as the children suffering from Progeria. The event is this Friday from 6:30 – 10 p.m. at UP Collective. More details are available on this blog and Adalia’s Facebook page. Bidding will close at 9 p.m., so get there early!

Looking forward to seeing everyone tomorrow night!

Adalia made a new video to say HI to her friends! 

These young people get it! Bullying is a disease that wreaks havoc like no other, and our family is not alone in this. We can’t even imagine how much work this took, but we’d like to send out some major respect to everyone involved! Watch this, share this, and live this … and maybe we can all just get along. 

Describing what life is like for Adalia is not an easy task. Progeria is a complex disease that involves more scientific and medical jargon than I have the ability to communicate to you – and writing about its potential cure will be just as difficult.

A few months ago I was on the Progeria Research Foundation’s website and saw a video of a TEDMED presentation by Doctor Francis Collins. He spoke about his journey to find cures for the over 4,000 diseases known to man, and, in particular, about the potential cure for Progeria. He also introduced a young man who has Progeria named Sam Berns. Sam spoke candidly about his battle with the aging disease; being involved in research and studies; how the disease has affected his life; and how he has, in many ways, already beaten it. If you have the time, I highly suggest that you watch it.

Dr. Collins, a geneticist and Director of the National Institute of Health, led an important study that could be the breakthrough we pray for – finding a potential cure.

As mentioned in one of my previous blogs, Progeria is caused by a particular cell that is a little different than it should be, mutated is how it was explained to me. What Collins discovered in his study is that, when you administer a cancer drug called Tipifarnib, these different cells become normal. The microscopic structure, that separates those with Progeria and those without Progeria, is no longer distinguishable.

They are currently performing the study on mice, which, when administered the drug, have been cured of cardiovascular disease. Though this study has not been proven to work on humans, it has shown promise.

Also interesting is the fact that this drug might be used to cure cardiovascular disease in adults as well. In fact, there is widespread belief that a cure for Progeria could mean a potential cure for aging. So, not only could doctors prevent those with Progeria from dying, but from dying for centuries.

What’s most important is the comfort knowing that doctors, scientists, and researchers are working around the clock to find cures for all of these diseases that affect so many people, young and old. It’s not just Adalia. Everyone is, in some way, shape, or form affected by these diseases.

I also wanted to say that the Progeria Research Foundation has played a key role in the progress towards understanding Progeria, and finding its cure. It is a terrific foundation that has accomplished so much in its 14 years of existence.

It’s exciting and promising to know that, through research and studies, they have made significant ground towards finding a cure for Progeria. So much so, that I feel confident they are knocking on the door of ridding the world of this terribly painful disease.

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. 

Thank you so much to the nice people from KXAN that came out last weekend to cover our fundraiser car wash to benefit the Progeria Research Foundation. The whole day was a great success because of our wonderful friends, family and fans. We love you all so much!

My daughter, Adalia, is truly one in a million. Her wonderful spirit is as rare as the terrible disease she’s been diagnosed with. Many of you may already know that Adalia has Progeria, a rare genetic disease that rapidly increases the aging process in young children. Though she acts every bit like a happy 5-year-old, Progeria is something Adalia battles every day.

Before Adalia was diagnosed, I had no idea what Progeria was. So I did what every concerned and scared parent would do. I went on a fact-finding spree. In addition to the information I received from the doctors, I read articles, blogs, books, science and medical journals … anything that had the word “Progeria” in it. What I found addressed some of my fears, and even enlightened me to some things I would have never guessed. Most importantly, it helped me understand what my child was going through, and helped me cope with this sudden and unexpected change. Now, I must warn you, some of the language can get very technical, but I’ll try to make it as easy to understand as possible. I hope this gives you a better understanding of Progeria.

I’m sure you’ve heard that Progeria is rare, but just how rare is it? Progeria affects 1 in every 4-8 million children. Currently, there are 92 children in 33 different countries that have been diagnosed with Progeria. This disease is not hereditary. So, despite the slim odds, Progeria could still happen to any child.

Named after the first two doctors who described the disease in the late 19thcentury, Progeria’s official name is Hutchinson–Gilford Progeria Syndrome. The two doctors described exactly what Adalia is going through: failure to develop, loss of hair, wrinkled skin and weakening eyesight. Children who have Progeria also have distinctive features, typically a small face and jaw with a pinched nose. Though the cranium of a child with Progeria may look big, it’s actually normal-sized. The small face gives off the illusion that the cranium is larger than normal.

One of my burning questions was “how do you get Progeria?” The answer lies in the small, microscopic processes that take place within our bodies. Everyone has a gene called LMNA. This LMNA gene produces a protein that holds the center (nucleus) of a cell together. When this very small, yet very important process doesn’t go according to plan, a mutation within the gene occurs. This is what causes Progeria. This is the difference between Adalia and any other normal five-year-old.

Though the effects may show themselves on the outside, on the inside there is a much different story. Not only does the disease not affect a child’s intelligence, but the intelligence among those with Progeria tends to be higher than normal. There is also no effect on the central nervous system. Their voice still sounds like a child’s, and their dispositions are like that of any other normal kid their age.

Progeria does not define Adalia, but if Adalia can help redefine Progeria by opening people’s eyes to what this disease really is, then I feel like we’ve done a good thing.

I hope to write more blogs similar to this. There is a world of information out there, and doctors and researchers are constantly making new and exciting strides in understanding, and ultimately curing, this disease. 

http://goo.gl/3j9yE

The wonderful outpouring of support and friendship for Adalia over the past six months has been overwhelming, and makes our sweet Adalia so happy. We all know that she truly is a blessed little girl. Support comes from people all over the world who heard her story, saw her beauty, and witnessed her courage.

Of course, in our world of balance, all love must come with hate. Many dear friends have seen my daughter take abuse from angry and scared individuals across the internet. WE WANT YOU TO KNOW THAT WE SHIELD ADALIA FROM THESE MESSAGES, AND ONLY SHARE THE LOVE WITH HER.

However, for the people closest to her, the senseless negativity is hard to ignore.

As hard as I try, I don’t think I will ever understand why people do, say and create such hateful messages. It simply doesn’t make sense. These people are attacking the person I love with all my heart because she is different. There must be a way we can help put an end to Cyberbullying, and I think we’ve found a place to start.

Mary Anne Hornbeck started a petition on CHANGE.ORG with the goal of stopping hate speech on Facebook.

It is part of Facebook’s policies and standards that hateful messages directed toward a person with a disease or disability will not be tolerated. However, despite reports from thousands of Facebook members, the negative pages, posts, and comments remain. Adalia deserves better.  We need Facebook to uphold its own policies at the very least, if we want to put a stop to online hate.

This problem is not Adalia’s alone. I have heard, and since confirmed, that over ONE THIRD of all young people are victims of Cyberbullying. This is a growing epidemic, and with your assistance we can help find the cure.

Please  click here to visit the Facebook: Uphold Policies & Standards Concerning Hate Speech petition on CHANGE.ORG.I know our network can get the requested ONE MILLION signatures.

Together we can put an end to Cyberbullying on Facebook.

 

http://goo.gl/FqjM6