Beyond Achondroplasia

Growing together with Clara

Far from the tree


I’ve been reading this amazing book for a while now.

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It´s dense, but clear. An excelent book by Andrew Solomon. And it open ideas wider than I could imagine. It as become a moment for pause in my days.

Now, we face moments for pause in our lifes too. Clara´s last CT scan showed no improvements is her hematoma. Quite the contrary. The hematoma seemed to dislocated to one specific area and not is 16mm wide and producing a more significant compression on her left side brain.

Clara will most certainly need to go under surgery. The last days, I´ve read more than 20 scientific papers about the subject, the eligible procedures, all the postsurgical complications…well, and really bothers me to realise that there is no consense on the approach: if a twist drill craniotomy or a burr hole, with drainage or not. Or even a subduralperitoneal shunt.

After all, a hole in the skull is always a hole in the skull… A chronic subdural hematoma is a rare event with an average of 1 case for 100.000 people, mainly older people.

This situation seems another step “far from the tree”.

Well, Clara did the CT awake. And to put aside the possibility of having coagulation disorders, she had 5 blood collection tubes taken too. She behaved graciously in all the occasions.

Tomorrow is the day to know the blood test results and to decide what the next step.

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Moments after the CT scan and ready for breakfast.

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  1. Thank you for sharing your story about Clara, she seems like a wonderful little girl. It’s not fair that some kids and parents have to take on so much pain but the joy these kids give there parents is above all expectations. I suppose part of that has to do with the worries and complications that comes with having kids with challenges in combination with the great joy and relief when life is normal. We learn to appreciate and enjoy what situations that many other parents take for granted. What ever surgery method you decide for Clara you will do it with the best intention for Clara and I’m positive she will be fine.

  2. Hi, I have been reading your blog with great interest. It’s been very informative and helpful. Our daughter is 16 months, and has achondroplasia too. Thank you for sharing all you have.

    Clara is wonderful. 🙂 And I was going to say more, but Mr. Sebek up there has worded all that I would have said, but even better. Many good thoughts and wishes to you all!

  3. Hello Ines, I just read your post below, did you get the blood result? I also wanted to inform you that I just attended a meeting in France with geneticists, doctors from Necker Hospital and also the Director of research Laurence Legeai-Mallet, she is sort of the head of the research for achondroplasia, she has been working on this for 20 years. From what she said, we should get the results of phase 2 for the BMN111 by the end of 2015, even if she could not really give us information due to confidentiality, she seemed quite confident and was already talking about phase 3… I would be happy to talk to you about it more even you want. big hugs to Clara. Best, Benoit Date: Sun, 30 Nov 2014 23:48:27 +0000 To:

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