It is a very difficut to write at this moment since our family has to face the reality to raise an abnormal but lovely kid, especially for Doris and Jeremy. I have been hoping for the best and now we have to face the worst. It was kind of expected, but as I heared the news over the phone, it was very hard to hold back my tears and cried for a while. But crying does not solve problems, we have to face it. It was a pure bad luck, statistically speaking- 1 of 10,000 or 15,000.

After reading articles from the internet and judging from the current conditions- Edda has normal size of head and she can walk, it is not that bad. Hope she is on the better side and has mild forms.

But we are not alone. As a matter of fact, every family has to face some kind of challenges, big or small. Life can never be perfact. Lets face the challanges and you have all the supports from us.

Dad is leaving the day after tomorrow. We will be in office and are going to make up some time tomorrow. Take care of yourself first. Then you can take care of the rest. Love you all.

2 thoughts on “Edda”

  1. Doris,

    I am very sorry about Edda’s diagnosis.

    From what I have read over the past two months is that Edda is blessed with a family that loves her dearly and will do their very best for her.

    I wish I was there to give you a hug, but since I can’t even give you my name yet…here is a cyber{{{{hug}}}}.

    Please know that I am thinking of you and your family.


  2. She’s beautiful, Rett or not.

    And she shows some very GOOD signs, with the walking and the fairly normal head size. She’s gorgeous.

    Have you joined Rettnet or anything? There’s some lists that are great for support and information.

    I wish your Edda a Rett journey that is as easy as possible, and much happiness.

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