Very Sad

Discussion in 'The Watercooler' started by Wiped Out, Mar 14, 2007.

  1. Wiped Out

    Wiped Out Well-Known Member Staff Member

    My sister in law just called. My great nephew (my nieces son) has the gene for Adrenal Luekodystropy. It's a devastating disease-I've posted about it before. The disease has started to progress. If they don't find a bone marrow donor to slow down the progress of the disease then he will be blind withing two years and won't live long after that. My nephew died from this (my niece's brother) when he was 11. This little guy won't make it that long without a donor. Members of husband's family have suffered so much from this. Two of husband's brothers died from this. At least three of my great nephews are carrying the gene.

    Please say a prayer. Thanks.
  2. tiredmommy

    tiredmommy Site Moderator

    My prayers go out for your great nephew. I pray a donor is found in time.
  3. Hound dog

    Hound dog Nana's are Beautiful

    So very sad. :frown: I hope a donor can be found in time.

    Saying prayers.

  4. timer lady

    timer lady Queen of Hearts

    Sending prayers.
  5. 'Chelle

    'Chelle Active Member

    Sending prayers for your great nephew.

    And as I urge everyone I know, I hope all will consider registering with your national bone marrow donation registry. You could help save this child, or another like him.
  6. kris

    kris New Member

    <span style='font-family: Georgia'> <span style='font-size: 14pt'> <span style="color: #663366"> i will certainly keep him in my prayers.

    here in florida it has become practice at rock concerts to have a booth which provides some kind of initial testing & registers people for the bone marrow bank. jarrod did it just this past saturday.

    </span> </span> </span>
  7. Marguerite

    Marguerite Active Member

    Here's hoping he can get a bone marrow transplant soon. What did you think of "Lorenzo's Oil"? Is it worth trying? Or did you already try it?

    Can you do some publicity on this to encourage people to get their bone marrow checked? An awareness campaign, especially in your local area, may help so many other people too, with other conditions that would benefit from bone marrow transplantation.

    Hugs to you. I wish I could do more.

  8. Lothlorien

    Lothlorien Active Member Staff Member

    I'd like to know how you go about registring with the bone marrow donor registry. I've always wanted to do that, but haven't got a clue how to do it. Whenever they've had bone marrow registry drives in my area, it was on days that I couldn't go. I haven't seen a drive in ages, around here.

    WO, I'm sorry to hear about your nephew. It is so sad. There needs to be an easier way for people to register. If more people could register, less kids and even adults would die needlessly. I sure hope it never comes close to that for your nephew.

    TYLERFAN New Member

    Prayers for healing and a suitable donor.

  10. 'Chelle

    'Chelle Active Member

    Lothlorien - There is a page that gives some registry office phone numbers that you could call to find out where you'd go locally to give the blood for testing etc.

    Here in Canada, we just call the local Canadian Blood Services office and get an appointment and be tested.
  11. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Thanks for the good thoughts and prayers. He has been on Lorenzo's Oil for awhile now-we were really hoping that would help but looks like it isn't doing the job.

    I think they may be doing some publicity near where the live. husband and I will get tested and we will keep praying.
  12. Sue C

    Sue C Active Member

    Prayers for a donor and for healing for your nephew.

  13. needabreak

    needabreak New Member

    my prayers are with you.hope you find a doner soon. :angel:
  14. Suz

    Suz (the future) MRS. GERE

    Sharon, I'm so sorry. I hope a donor is located soon.