Friday, March 5, 2010

Next week I will post more on Revision & Self Editing

Today I wanted to tell you about little Angelina. She was born with the same disorder that Christopher has. And she is going to have a hemispherectomy operation to remove or disconnect the outer layer of the affected half of the brain. Christopher was never a candidate for this particular surgery, because both sides of his brain are affected. I will leave a link and you can read up on her surgery if you'd like to. http://www.northnorfolknews.co.uk/content/northnorfolknews/news/story.aspx?brand=NNNOnline&category=news&tBrand=NNNonline&tCategory=news&itemid=NOED02%20Mar%202010%2018%3A54%3A24%3A163

Sturge-Weber affects the brain, skin, eyes and other parts of the body. It is super rare. It also causes stroke. And it seems that a lot of Sturge-weber patients get cancer. There are learning disabilities because of all the seizures and blindness too. Some have such pain in their eyes that they have to have the eye removed. Thankfully Christopher still has his sight. He is mildly learning disabled. But he reads, writes, and loves to sing. His reaction time is so very slow that he will never be able to drive.

Christopher use to have 35-40 seizures a day.  Christopher has the most rare form of the disorder. The port wine birthmark covers 85- 90% of his body. Most only have it on their head and face and some don't have the birthmark at all.

Please pray that the surgery goes well for this precious little girl.

Thank you for all the prayers for Christopher. Still no news, but no news is good news?? I love you all so very much. =)

26 comments:

  1. That's really heart-breaking. I will definitely keep both Angelina and Christopher in my prayers.

    ReplyDelete
  2. Definitely praying for both Angelina and Christopher.

    ReplyDelete
  3. Thanks for giving an explanation of Christopher's disorder. It helps in knowing how to pray for him! Will keep precious Angelina in prayer - when is her surgery scheduled?

    Have a fantastic weekend! God bless!

    ReplyDelete
  4. My heart breaks after reading this Robyn. I'm covering this babies in prayer. God knows. God cares. God is able.

    ReplyDelete
  5. Oh she is a cutie. I am praying for her! And for Christopher, too, of course.

    ReplyDelete
  6. My heart is torn with the very thought that one single person must suffer this disorder.

    My prayers continue for Christopher and Angelina.

    ReplyDelete
  7. I agree with Maria. Thanks for the details. It really does help to understand it better - I believe it will make for stronger prayer. Please keep us posted about your darling Christopher, and I will continue to pray for him daily.

    ReplyDelete
  8. I think it is so helpful that you share this information .. who knows how many people it can teach/touch/inspire. Prayers being sent out from here in the rockies.

    ReplyDelete
  9. Breaks my heart. Hugs for all of you.

    ReplyDelete
  10. What a sweet baby girl. My prayers are with her.

    ReplyDelete
  11. I'm praying for this precious little girl. I'm praying for handsome Christopher too. Hugs my friend!

    ReplyDelete
  12. Oh, this is heartbreaking, Robyn. I am so glad you share so much about it.
    Hugs :)

    ReplyDelete
  13. Thanks so much for bringing this disease to the public knowledge. I had never heard of it before. I hope everything works out for her and for you.

    ReplyDelete
  14. You are an inspriation, Robyn. Praying for you and Christopher. Is there anything more specific I can pray about besides his health? Specific concerns or things I can ask God for on your behalf?

    You are a blessing Robyn!
    Katie

    ReplyDelete
  15. Hi Robyn -

    Praying for the this little girl and Christopher.

    Blessings,
    Susan

    ReplyDelete
  16. I'm giving you an award on my blog tomorrow, dear friend! :-)

    ReplyDelete
  17. My thoughts are prayers are with everyone. Blessings upon all.

    Stephen Tremp

    ReplyDelete
  18. Sending my prayers for success regarding both babies.

    ReplyDelete
  19. Oh Robyn, my heart is breaking into tiny pieces. I love you so much. I keep praying for Christopher and his doctors. This little girl will be included as well. I want you to know how incredible you are. Truly, TRULY Amazing!! I couldn't imagine the kind of strength you have to carry so many people with-and you do it so effortlessly. I hope you are well too. You're at the top of the prayer list.

    ReplyDelete
  20. I'll second Kristi (and everyone else!) in saying that you are truly amazing. Know that you and your family, and especially Christopher and Angelina, are in my thoughts and prayers.

    ReplyDelete
  21. So heartbreaking that any child or person should have to go through this. Thank you for sharing stories about these children. My son is luckier than he realizes, but he will some day. You have a Hugh heart! I am praying for all these children. Hugs, Coreen

    ReplyDelete
  22. My prayers are with Angelina and family. She is a cutie! And of course, continuing prayers for Christopher. So glad that our paths crossed and to get to know you.

    ReplyDelete
  23. I had wondered what he had and just recently found out. That sweet baby...
    How old is Christopher? And wow on the seizures. I can't imagine how scary that must've been.
    Praying...

    ReplyDelete

Leave me a note! :)