Announcement

Collapse
No announcement yet.

Need prayers for my nephew.

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Need prayers for my nephew.

    I'll just copy and paste my brother-in-law's email. He described the situation very well. This will hit home with anyone with kids, or one on the way. Some info I didn't know about.

    [quote]
    Just to let everyone know, Xander has been accepted into an FDA Cord Blood Transplant trial study at Medical College of Georgia. We first found out about this almost 2 years ago on the internet when I found a report on children with Cerebral Palsy being cured by a transplant of their own Cord Blood (stem cells).

    We have been working ever since then to find a study to get him into. Since it's experimental, doctors can't just treat him, it has to be part of an FDA study and insurance doesn't cover it. There are only 2 places doing studies right now, Duke and MCG. Both initially refused him, then MCG changed their study and now Xander qualifies.

    We have a confirmed appointment for a transplant on 27 May in Augusta, GA. Then we have to go back 3 months later for a repeat. Since it's a double blind study, we won't know which transplant will be cord blood and which will be placebo...unless of course he gets better after the first one!

    Xander is 5 years old, cannot walk by himself, has little use of his left hand, and is still in diapers. So while we are praying for a cure, any improvement is worth the time and money to improve his quality of life.

    So please keep him in your prayers. The first trip will be tough. A full day of neurological baseline tests (26 May) to determine his capabilities and limitations for the study, then a second day of transfusion(27 May). We initially thought it would be a lumbar puncture and infusing his spinal fluid with his stem cells. We have since learned it will be a standard IV transfusion (much to our relief).

    3 months later we will have to go back. The second trip will be much harder, since he will be fully aware of everything they are going to do. The second trip will be a duplicate of the first, a day of testing and a day of transfusion.

    Then we have to go back twice, 3 months apart for follow-up neurological testing only. I'm sure he won't believe us that he isn't going to have to endure it all again so it will probably not be a lot of fun for anyone.

    As hard as it will all be, we are glad to get the opportunity to get him into this study and try to get some improvement for him.

    If you know of anyone having a baby, please urge them to bank their child's cord blood. It's expensive if you're on limited income, but it is also invaluable insurance. Without Xander's cord blood, there would be no hope of a treatment for him. Cerebal Palsy cannot accurately be diagnosed until the child is 18 months old, and there was no indication of any problem during the pregnancy. They are also treating juvenile lukemia and other diseases with cord blood.

    Please keep us all in your prayers,

    Shaun
    [quote]


    That's Xander on the right. His brother, Harley on the left. With the long hair, they look exactly like Jennifer at that age.
    Last edited by Scott Liggett; April 22, 2011, 12:06 AM.
    BS'er formally known as Rebeldryver

    Resident Instigator

    sigpic

  • #2
    You said that this will hit home with anyone with kids..it sure does!!.Prayers sent.

    Comment


    • #3
      Got it !!!

      Comment


      • #4
        prayers sent and heres hoping the first part helps him so he'll be wanting to go to the rest. as it'll make it easier on everybody..

        Comment


        • #5
          He's got my prayers -
          Last edited by 70chevyC-10; April 22, 2011, 05:27 AM.
          Phil / Omaha

          Comment


          • #6
            Best Positive Energy from here. As proud Grandpa I can relate - sort of. We are wildly fortunate to have healthy kids and grands so I can only imagine what it would be like to live with this. Everyone will have to exhibit unbelievable bravery - and I know they will.

            Hugs to Xander
            Dan

            Comment


            • #7
              For all that little trooper will endure it'd be my pleasure to send thoughts and prayers for him and his family .... consider it done Scott.
              Whiskey for my men ... and beer for their horses!

              Comment


              • #8
                My wifes sister had Cerebral Palsy, I know what they must be going through. Prayers will be sent and I hope everything goes well.
                Moonshine the official Power Tour Drink.

                Comment


                • #9
                  prayers going up now
                  Doing it all wrong since 1966

                  Comment


                  • #10
                    Consider it done, brother.
                    Formerly Shannon (aka: HillbillySailor). 2549 posts.

                    Comment


                    • #11
                      Reb, this does hit real close to home with me. My 18 yr. old daughter passed away last month and she had lived with severe Cerebral Palsy her whole life. I sincerely hope that your nephew has a vast improvement due to this treatment and my thoughts and well wishes are on the way.

                      Comment

                      Working...
                      X