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Calling on Friends

I've photographed more than 450 weddings now, spread across the last eleven years, and even though I can't remember where I put my keys five minutes ago, I pretty much can remember something about each and every one.

Sometimes it's because of a particular venue or locale (Cabo San Lucas was nice, as was the backyard wedding a few houses away), sometimes it's because of a particular event (the blizzard of a few years back proved challenging, as did the the weekend after 9/11), and sometimes it's because of a funny moment (a bride with a long train almost having her head taken off by somone stepping on her veil 50 feet down the aisle.)

But without a doubt, the main reason I remember so many of the couples I photograph is obvious: we connect, we become good friends and we stay in touch long after their big day for no business purpose whatsoever.

Kara Simmons, whose blood runs Tar Heel blue, got her dream job as an attorney for UNC in Chapel Hill and we still drop each other a note every year. Dr. Matthew Levine, an orthopedic surgeon, whose wedding I photographed a few years ago at Union Station, just ended up rescuing my knee from incredible stiffness. Julie Newell, who has a wicked sense of humor, sends me sarcastic notes telling me when I need to post a blog entry. I saw former bride Kelly Corrigan, the bestselling author of "The Middle Place," a book about her breast cancer and her relationship with her dad, at a booksigning hosted by her best friend, Missy Carr, whose wedding I shot as well. And Caroline Landau, who got married back in August of 1997, just a few months before I did, became one of my wife's best friends.

The list goes on almost as long as the list of actual weddings.

One couple, Kevin and Dominique Coloton, is hard to forget as well, mainly because I see Dominique's smiling face almost every day of my life. A photo of her looking into a mirror (held by makeup artist extraordinaire Erwin Gomez), one I shot many, many years ago still graces my web site, my studio wall, my brochures. It's like a reverse painting of Dorian Gray--Dominique may be older in real life but her photo always stays the same in my book.

I recently received an email from Kevin detailing the developmental problems their little daughter Catalina is having and, with his permission, I relay that information to you now. Just under two years of age, Catalina has been diagnosed with Rett Syndrome, a devastating illness. Probably like many of you, I had never heard of the disease and I'll quote from Kevin's email:

"As some of you may know, our daughter Catalina, who is now 22 months old, has been developmentally delayed. Dominique has been on a leave of absence since the end of August while we were going through an evaluation for Cata's delays. We have now found a reason for her delays, although it was not a reason that we were prepared for. Catalina has a neurodevelopmental disorder called Rett Syndrome. This devastating disease robs her of her ability to speak, of her ability to use her hands productively, and likely will take away her ability to walk. Our dreams were shattered in an instant when we learned of this diagnosis.

Cata will not say "I love you Mommy and Daddy", she will not bring home scribble drawings for us, she will not be an athlete, I will not be able to walk her down the aisle one day. Instead her reality is one of dependence. She is a beautiful girl who has thoughts, who has wants but who is trapped inside a body that won't allow her to express them. She will need our help to walk, to feed, to dress, to communicate for the rest of her life.

Rett Syndrome is a rare neurodevelopmental disorder affecting 1 in 10,000-20,000 female births. There are currently about 4000 girls diagnosed with Rett Syndrome in the US. The mutation causing this disease is carried on the X chromosome, so it is almost exclusively girls who are affected (affected boys do not survive long). This disease is not inherited but rather a random mutation that occurs in the genes. Girls who are affected develop normally for the first 6-18 months of life and then begin to develop symptoms. They initially begin to have some developmental delays and then they enter a phase of regression where previously acquired skills are lost. They lose the ability to speak, they lose purposeful use of their hands, and they most often lose their ability to walk independently.

Many of the girls also suffer from seizure disorders, malnutrition requiring tube feedings, severe scoliosis often requiring surgery, sleep abnormalities, and breathing irregularities. Some girls develop autistic features that are temporary (can last years). Rett Syndrome has been classified as the most debilitating Autistic Spectrum Disorder.

Needless to say, I was blown away by this news. Those of you who read these musings know I love children, most especially my own daughter, Alexandra. There's no such thing as "too much love" when it comes to a child. With that in mind, I send all my good hopes and thoughts for Dominique, Kevin and Catalina.

Now, here's where you all come in. As you know, we take pride here of our various fundraisers, which, over the last five years have raised more than $40,000 for worthy causes. We've given to families to children whose fathers were killed in Iraq, Multiple Sclerosis and tsunami relief. Most of these fundraisers have come in the form of Photo Marathon, our once-a-year charity portrait event. (This year's event will probably take place in the winter.)

But other times I've simply asked you to help, with no formal structure. This is one of those times. Again, from Kevin's email:

October is Rett Syndrome Awareness Month, and I invite you to continue reading below to learn more about Rett Syndrome and to learn about how you can help.

The amazing thing about Rett Syndrome is it is considered the Rosetta Stone of neurologic disorders. Characteristics of Rett Syndrome are seen in so many different disorders that a cure could lead to a cure of other diseases such as autism, Fragile X, even Parkinson's. In February 2007 a researcher found that a "rett mouse" who was fully symptomatic was able to have symptoms totally reversed with genetic manipulation. This means there is hope for a cure, we just need to find how to make that cure possible in humans.

There is an incredible group of motivated scientists who are working endlessly to find a cure. They are the Rett Syndrome Research Trust. Their goal is to have a drug to help symptoms of Rett within FIVE years – that would make Catalina not even 7 years old. There is hope that she may one day be able to participate in life more fully through the efforts of these individuals. The researchers also want to test 3000 drugs and compounds as possible medications to reverse the symptoms. They need just $168 for each drug. If you feel moved to donate to these researchers and their efforts in honor of Catalina, click here.

There are ten days left in the October, Rett Syndrome Awareness Month. Let's all do what we can. $168 from each of us can go a long way.

 

Thanks,

 

Matt

p.s. As we've always done with Photo Marathon (to great success), please forward this link around to anyone you know with a big heart. Also, please put "Catalina" in the "on behalf of" line of he doantion form.

Posted on Tuesday, October 21, 2008 at 10:45AM by Registered Commentermatt | Comments4 Comments

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Reader Comments (4)

Kudos to you, Matt, for bringing attention to this. As the father of a young man with Spina Bifida, I can completely relate to this family's situation. I wish them much hope and strength.

Hopefully all who are able will donate to this worthy cause.

-Bruce

October 23, 2008 | Unregistered CommenterBruce L. Snell

Thanks Bruce. You know I think you're the best.

Matt

October 25, 2008 | Registered Commentermatt

Thanks Matt for bringing this to our attention......I personally know how supportive you are to our young friends in need.
I pray that these researchers will find a cure for Catalina and all the other children who suffer from this debilitating disease.
It takes everyone doing whatever we can to bring awareness to these awful diseases and if we spread the word we will find ways to to bring attention to this and all of the horrible things that are putting havoc on the lives of these Angels.

As you may know last week I lost someone so dear to me, you may have even meet her at one of our weddings (she used to come along and help me). She fought a fight like no one I have seen but after 4 weeks she lost that battle. Brain tumors in young adults are another one of those diseases that need awareness.

My prayers go out to Dominque,,Kevin and Catalina....I will do what ever I can to bring her story to my friends.

November 5, 2008 | Unregistered Commenterkim

Matt - I ran across your website while searching for wedding venues for my newly engaged 25 year old son, Nathan. Nathan is the brother of 26 year old Michael who suffered a traumatic brain injury in an auto accident on his way home from Manassas to Arlington exactly one year prior to your posting about little Catalina - October 21, 2007.

Six degrees of seperation? Michael and Nathan are Ron Reese's nephews. I am Rae, his sister.

Reading your post, my heart breaks for Kevin and Dominique but for beautiful Catalina and for my Michael I will Keep Hope Alive. xxoo

November 9, 2008 | Unregistered Commenterrae

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