Wiskott-Aldrich Syndrom

Discussion in 'Parent Emeritus' started by PonyGirl, Jan 2, 2009.

  1. PonyGirl

    PonyGirl Warrior Parent

    Well my friends, we got the test results back, and they weren't what we were hoping for. Baby Julius tested positive for WAS. Shawna will see a specialist next Wednesday to discuss when & how to deliver, and what possible course of treatment.

    difficult child & S are upset. I am upset.

    Now my prayers turn to a successful cure, which from what I can find in my online research may be cord-blood transfusion or bone marrow transplant.

    One Day At A Time

  2. jbrain

    jbrain Member

    Hi Pony,
    I am so sorry to hear the test results for Baby Julius. I am sure you are all upset, this was not the news you were hoping for. I hope a transfusion or bone marrow transplant is a possibility for Baby Julius. I am sure it is hard to wait til next Wed. to see the specialist.
    Lots of hugs,
  3. everywoman

    everywoman Active Member

    Pony I'm sorry that you got such a negative report. Prayers being said that something can be done.
  4. Fran

    Fran Former Site Owner

    I'm so sorry for your family.
    Let's hope for the statistics being wrong and little Julius lives a long and healthy life.
    I am sending so many hugs to you.
    Hope for success with the stem cell treatment.
  5. Jena

    Jena New Member


    I am so sorry that the results returned positive. My heart goes out to you and your family. I hope that the meeting with the dr. on wednesday gives shines some hope onto this.

    Please keep us posted.

  6. Hound dog

    Hound dog Nana's are Beautiful

    Julius is a strong name.

    I'm so sorry the test came back positive. Praying hard their prognosis is off and he responds well to treatment.

  7. trinityroyal

    trinityroyal Well-Known Member

    Sending prayers that little Julius responds well to treatment.
    I'm so sorry.

  8. KTMom91

    KTMom91 Well-Known Member

    Adding my prayers. I'm so sorry.
  9. Suz

    Suz (the future) MRS. GERE

    Oh gosh, PonyGirl. I'm so terribly sorry.

  10. DazedandConfused

    DazedandConfused Active Member

    I'm so very sorry. It's devastating to have to face such a grave diagnoses with a little one.

    I read a bit on it. Seems there is a very good chance of long term survival if a bone marrow match is located. Of course, that has it own risks (Host vs. Graft Disease). In the meantime, he will require vigilant medical care.

    Please excuse my straight forwardness, I'm a Mom of a Leukemia survivor. There was no internet like there is today and I can remember scouring for information on treatments and survival rates. I went to the public library and used the hospital's medical library. I was helpless otherwise. I couldn't tolerate being at the mercy of doctors and wanted to have a comprehensive understanding of what my child faced.

    Sending hope and positive thoughts to you and your family.

  11. PonyGirl

    PonyGirl Warrior Parent

    Yes, it's the vigilant medical care that has me terrified. A lot like what MB is sharing in her thread about her daughter, I worry about the capabilities of difficult child to handle a special needs child. No car, no health insurance (yet?) not a great income. S is not working, and I suspect she won't explore going to work after Julius is born.

    Honestly, it was going to be tough enough for them to raise a perfectly healthy baby. The added stress of this dreadful disorder has dashed a lot of my hopes. I pray I'm wrong, and difficult child will step up to the plate, and S will mature, but I am afraid.

  12. DazedandConfused

    DazedandConfused Active Member


    I didn't mean to be cavalier about this very painful and difficult situation.

    It's awful and the difficult child factor makes it even more so.