Costello syndrome – Por qué?

Photo Essay By Anahita Nicoukar Avalos

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 4 years 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 development 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? )


  • what a beautiful son you have! and your words are so touching… the love of a mother is like no other… for any of us

  • Alice Daxon

    Beautiful work once again Anahita!!

  • Lou Shimbart

    Beautiful!

  • Princessofderby

    Your son is lovely! Brought a tear to my eye reading this, God bless you both xx

  • Barb

    What a heartwarming story of love, hope and patience.  You are a hero and the world needs more moms like you.  Hugs to you and your wonderful son.

  • Thank you so much everyone.

  • rosa magdalena coronado molina

    Haces una excelente interpretación del amor de madre a traves del relato del síndrome del bebe, efectivamente para las madres y familias de un bebe con características especiales no hay por que esconderlo, precisamente porque esos avances lentos de tu bebe son un gran logro que habla bien de sus padres que se preocupan por darle lo mejor a su hijo no solo su amor. Gracias por compartir su experiencia.

    • Eamonn

      English:

      You make an excellent interpretation of a mother’s love through the story of baby syndrome, in effect for mothers and families of a child with special features that hide there, precisely because such slow progress of your baby is a great accomplishment that speaks well their parents who are concerned about giving your child the best not only his love. Thanks for sharing your experience.

  • rosa coronado molina

    Usted demuestra como es realmente el amor de una verdadera madre y un ser humano cabal, es claro que a un hijo no se le debe ocultar nunca, ellos representan lo que somos como padres, y usted y sergio son maravillosos padres. Felicidades por el amor que le da a su bebe. Besos y abrazos.

    • Anonymous

      English:

      You really show the love of a true mother and a human being fully, it is clear that a childshould not be hiding ever, they represent who we are as parents, and you and sergio are wonderful parents. Congratulations on the love that you give your baby. Kisses and hugs.

  • Your son is beautiful.  

  • Muskaan

    Beautifully told, thanks for sharing. I’m glad Ulysses got a mother like you and I wish every child with Costello or any other ‘syndrome’ would. God bless.

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