Photo Essay

Costello syndrome - Por qué?

A sunny day of March 2003, the word COSTELLO entered my life. This was the day a geneticist said: it's likely that your son has Costello syndrome. He didn't say a lot more, I didn't ask anything and before I went back home he took a few pictures of my son. With a small digital camera and the flash in he took pictures of his face, close ups of his mouth, his nose, his hands, his neck, his feet. These pictures reminded me of the pictures you see in medical reviews to describe horrible diseases. My beautiful little boy whom I was so proud of his smile and black eyes, couldn't possibly have a terrible disease...I couldn't help thinking ,if he wanted some pictures of him why didn't he ask me ? I could have given him better ones where everyone could see what a nice baby he was.

Once at home I searched Costello syndrome on the web, I learned that "Costello syndrome is a genetic disorder that affects many parts of the body. This condition is characterized by delayed development and mental retardation, distinctive facial features, loose folds of extra skin (especially on the hands and feet), and unusually flexible joints. Heart abnormalities are common.... Beginning in early childhood, people with Costello syndrome has an increased risk of developing certain cancerous and no cancerous tumours...."

Also only 250 people in the world were diagnosed with Costello syndrome.

Now I knew why the doctor had taken these pictures of my son and also why he didn't tell us anything about this syndrome.

This first diagnosis happened when my son Ulysses, was 16 months old.Time passed and he'll turn 7 in a month.

I can't deny he's not like a regular 7 year old.Yes his facial features are a lot like the other children who have Costello syndrome. Also he grows very slowly, he looks like a 3 year old .He started to walk when he was 4years and 3 months, he started to eat when he was 6 years old .He still doesn't speak much, only a few words even if he understands a lot more. We have to check regularly the developpement of his heart as he could develop cardiomyopathy,he sees regularly an orthopaedist ,and he's got regular scans in prevention of tumors...He needs help to learn as he doesn't have a good concentration, as he is much slower than regular kids. We encourage him a lot to give him the self confidence he needs to make progress .

I've been regularly taking pictures of my son to help myself to see him and to show him to the world.I love to show his difference because I think there's nothing to hide and we are all physically different from each other and we are all beautiful. I also love to show how he resembles any other child, because that's what I see now and that's what it took me a few years to be able to see. Ulysses is a happy child who loves life just like any other child: he is the centre of the universe and dreams that when he'll be old enough he could go to work by car just like his dad. Every day he discovers the world, its flowers and trees, its animals, its people, everything is like a game, everything is a bit too big everything is mystery, everything is : WHY ? (Por qué? )

You can get more information about Costello syndrome

And also donate here http://www.costellokids.com/

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15 responses

  • Alicia Rutkowski

    Alicia Rutkowski said (25 Sep 2008):

    what a wonderful and informative story. and yes, he is a beautiful little boy... and a great little model as well!

  • anahita nicoukar avalos

    anahita nicoukar avalos said (25 Sep 2008):

    thank you very much Alicia.
    He knows he's a beautiful little boy believe me :-)

  • Spectre Photo

    Spectre Photo gave props (30 Sep 2008):

    Wonderful story and your son is a cutie pie. I love the photos you take of him!!

  • anahita nicoukar avalos

    anahita nicoukar avalos said (30 Sep 2008):

    thank you very much.

  • rod simeon

    rod simeon said (9 Oct 2008):

    The way these photos tell the story is so moving.
    Bravo!

  • JS Daniel

    JS Daniel gave props (16 Jan 2009):

    Wow!!He is wonderful.The photographs are very nice.

  • Chad Cheverier

    Chad Cheverier said (17 Jan 2009):

    This a great story with great photos. I really like your composition and the stories the images alone tell. Great work, I am sure you are a good father.

  • Valentina Fontanella

    Valentina Fontanella gave props (3 Jun 2009):

    I love Ulysses, your pictures are wonderful!

  • anahita nicoukar avalos

    anahita nicoukar avalos said (20 Jun 2009):

    thanks everyone for your nice comments.

  • Karen Foto Fiddler

    Karen Foto Fiddler (Deleted) gave props (26 Sep 2009):

    I voted to publish. What a touching story. I am afraid I have never heard of this terrible disease.How is he getting along now? In my prayers.

  • refocus project

    refocus project said (14 Dec 2009):

    honest, beautiful, touching.

  • Breezy Ritter

    Breezy Ritter gave props (2 Mar 2010):

    This story is amazing. I'm so inspired by your son and these photos. I wish you all the best of love in everything. He's an incredible boy.

  • Maura Wolfson-Foster

    Maura Wolfson-Foster gave props (5 Jun 2010):

    Of course, my vote Anahita....can't believe I didn;t see this essay earlier. Have always loved your photography, esp. those with Ulysses in them - such a loving family. God Bless You. xo, ~ M

  • Pat Crepeau

    Pat Crepeau said (5 Nov 2011):

    That first picture is funny! He is a cute kid.
    Good luck with everything,
    Pat

  • MindTheStep

    MindTheStep gave props (17 Nov 2011):

    It's a wonderful story!

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