My medical record

It all started the day of my birth, earlier was nothing in the echoes or doctors would not see it because of ignorance, once I came my mom ‘s belly they noticed that one leg was noticeably bigger than the another and with a blood stain on it. Physicians began with all relevant tests to find the cause of the problem in the leg and finally got a generally diagnosis without not to much information, they said that it was Klippel-Trenaunay, my parents had no idea that was, they were told only that was a vascular malformation and they needed to do some another studies because it was a rare syndrome, they needed to wait a few months because they can do nothing until i was older to see how evolved the leg, that after three months they could do a MRI and we’ll see.

Once past the 3 months, at the end of July we reached the hospital with much fear because they needed to make me sleep but when I put in the machine loud noise woke me up and scared me a lot to see me alone in this tunnel. So they had to cancel it and decided to postpone the day to September 5th, 2012 to put me general anesthesia to successfully perform the test.

We went to the hospital the night before to the MRI to be prepare from the anesthesia that they was going to apply. i couldn’t eat anything, was a eternal night .

At 10:30 in the morning the nurses took me numb and after a few hours I finally delivered with typical symptoms after anesthesia: cold, tremors and dizziness and others, was a rather complicated test for being so small obviously.

A day we arrived and confirmed diagnosis was Klippel but they could not do anything because in the hospital where I was born had no knowledge of this syndrome.

From there , my parents started taking me to other hospitals and other specialists , the first thing that went was the San Joan de Deu , who specializes in children. We met first with the vascular surgeon , my parents taught him the MRI and when he saw her he realized he was badly done , and it did not help that we had passed .

And so the months passed and passed and my little leg grew considerably …

A month before turning my year old, I returned to practice another MRI in April 2013 , more than six months after the first attempt and after another tough day finally diagnosed an alteration of Klippel- Trenaunay- Weber which called ” Parkes Weber ” .

The doctor told us that she could have the surgery he needed in the month of July, but this is the date that has not yet given us more than any kind of response from the doctor. The thousands of times my mom tried to communicate was informed that the operations were planning all year and I was not on any list , so we were not given but no solution or option for me and my condition.

After analyzing both , my parents decided to move to Switzerland in the hope of finding better commitment and knowledge by physicians. Continue past months and after many analyzes , consultations and meetings regarding my case , they decided not to operate on ignorance of the syndrome , they told my parents that it was impossible to operate because it was too risky , which shattered the hope of my daddies and I was very sad.

Swiss doctors told them there was no option for either the present or the future, only option I saw was myself half to keep me a little leg growth , but the size difference between the two legs is very remarkable , for the time I was 6 cm difference in circumference between the right and left and length already exceeds half inch , not counting the width of my foot , which makes it impossible for me to find some kind of shoe that fit me .

Thanks to my mom who since birth has not stopped to inquire about my condition to understand a little bit we faced , and after many recommendations in communities that talk about the seindrome , found that in Argentina there is a doctor named Christopher Miguel Papendieck that is an eminence , is a specialist in vascular surgery , pediatrician and has conducted several studies and publications on this type of vascular syndrome .

He immediately got in touch with him and has been the only one who has given us some kind of hope and a practical and secure solution . To this day , my parents have met with on Skype , whether exams have sent mine in the mail and have already scheduled a visit to see me personally in Rome on 14 September that casually be in town lecturing on the subject.

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2 Comments

on “My medical record
2 Comments on “My medical record
  1. Soy amigo de Doris Adela Mondragón, quien nos puso al tanto de la situación de Noah. Cuentan con mi oración y voy a compartir acerca la necesidad, con mis contactos, en busca de oración y fondos. Dios está con Noah. Con amor en Cristo,
    I am a friend of Doris Adela Mondragon, who told us about Noah’s situation. You have my prayers and I am going to share about Noah’s need with my contacts, and seek prayer and funds. God is with Noah.
    With love in Christ,
    Pher Acosta

    • Hola Pher, muchas gracias por todo el apoyo brindado, por esas oraciones que se no se quedan en el aire.Gracias por compartir nuestra pagina web y el sitio de facebook, asi sumaremos mas!

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