Boogie's Story

Dillion Craig (a.k.a Boogie) was born March 4, 2002 - He is a miracle and inspiration born with a condition so rare that it only occurs 1 in every 300,000 live births. A condition called Hydranencephaly. When he was born Dr's gave him less than a 1% chance of ever leaving the hospital and going home. However, Dillion lived nine amazing and wonderful years touching every single person he met, and proving every Doctor who he ever seen wrong.

Boogie, was and is the entire reason for my blog. I oringinally started a blog Boogie's Place in 2003  to tell Dillion's story and allow others to keep up with his health journey. When Boogie passed away in August 2011 I started my own blog, as a way to try and cope. I am now learning to live life as Boogie would have wanted and see all the humor and happiness life has to offer (just as he did)

 
Please feel free to visit Dillion's website (Boogie's Place ) and learn more about my sweet little miracle. Or please stop by and visit the Hydranencephaly Web site to learn more about Hydranencephaly  and read the stories of the other sweet Hydran Angels who are touching lives daily!
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Help Spread Hydranencephaly awareness!!
(written June 2013)
 
If you have read my blog before tonight, then you likely already know that my son Dillion (aka Boogie) was born with a very rare and terminal condition known as Hydranencephaly. What you may not know however is this. When I found out I was pregnant with Dillion I was 18 years old, and Dillion was diagnosed when I was 28 weeks pregnant. From the point of diagnosis forward doctors tried to convince me that my sons condition was not compatible with life. They stated that he would live mere hours, and that he would be blind, deaf, and essentially a vegetable unaware of  his surroundings and incapable of any sort of normal life. They consistently tried to convince me to abort, or allow them to induce premature labor and let nature run it's course. Their reasoning for such suggestions was that I was young, and I already had two healthy children.


I of course refused and told doctors over and over that I owed my son every possible chance at life. I planned to give him the longest happiest life I possibly could. Of course life with a terminally/chronically ill child was not always easy, and there were times when the hospital became our home. Dillion took many medications, underwent numerous tests, had 9 surgeries, wore a back brace, was totally dependent, G, tube fed, had a shunt (to treat Hydrocephalus), was wheel chair bound... BUT he was far from blind, deaf, and unaware of his surroundings. He was the most AMAZING child! He could roll, speak several words, was ALWAYS happy, had a smile that warmed the coldest hearts, amazed all of his doctors and therapist, was strong willed, spoiled, and the BEST snuggle buddy ever!!! 


Dillion lived 9 years, 5 months, and 5 days. That is 9 years, 5 months, and 4 days longer than any doctor every predicted. During those nine years Dillion was a fighter, an inspiration, and MY HERO!!! I am often asked if I would do it all again, (knowing what I know now) and without any hesitation I always answer IN A HEARTBEAT!!! The nine years I had this awesome little boy in my life taught me more about myself, about love, and about life then anything else every could... He was, and always will be my miracle, my heart, my life, and my angel.
 
Unfortunately, due to the fact that Hyrdranencephaly is so rare (1 in every 300,000 live births) there is very little known about this condition even by doctors, nurses, and those who are "there to help" sadly over 11 years later doctors are still telling parents that there child's condition is incompatible with life, and doctors all over the world are giving up on these children. It is a sad fact that in this day in age these children are unable to get medical care they need and deserve because doctors and insurance companies are convinced these children could not possibly have any quality of life..

Does the happy smiling baby in these pictures look as though he is unaware of his surroundings? Does he appear to be a vegetable? Does it look as though he lacks love or quality of life?  I think NOT! Dillion was full of life, love, and laughter... He enjoyed every second of every day.


There are 100's of children just like Dillion who are full of life, love, and laughter. Enjoying every day they are here, and their parents, grandparents, brothers, sisters, and families are enjoying life with them cherishing every second they have with their amazing miracles and never taking a single thing for granted...



However we desperately need to spread awareness of this condition... We need to let the world know that these children are amazing and wonderful, and DO have a wonderful quality of life... They ARE worth it, and they deserve to live life to the fullest getting every medical treatment, piece of equipment, test, etc. that they need






June is Hydranencephaly awareness month and I ask you to please visit the Hydranencephaly website or the Global Hydranencephaly Foundation  and share this information. Please help me to get the word out. Please help make every month Hydranencepahly awareness month!


I LOVE SOMEONE WITH HYDRANENCEPHALY!!!
June is national Hydranencephaly awareness month. Please help spread awareness. Help us make every month Hydranencephaly awareness month!

24 comments:

  1. My best friends son has this and as soon as I saw Boogies picture I saw Frankie in him. Takes a very strong woman to raise such a great kid!!!

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    Replies
    1. Well thank you, but all my strength came from Boogie, he was/is my hero

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  2. You are an amazing mom and your family is beautiful! Dillion was blessed to have you as a mom. xo Melissa http://www.melissaproductions.com

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    Replies
    1. Well thank you very much but I feel I am the blessed one

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  3. Woah! How strong you must be, I bet most days you don't feel it though, eh? Trust me, I could never go through all of that! I checked our Boogie's page too.

    What an amazing life Boogie had and an amazing mumma you are! You're doing an amazing job xx

    ReplyDelete
    Replies
    1. Thank you and you are right, most days I certainly don't feel strong, most days I feel weak, but I draw my strength from my hero (my son) thank you also for checking out Boogies page

      Delete
  4. Wow. One huge mommy hug to you. I can't imagine all that you had to go through with this. Thank you for sharing your story. <3

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    Replies
    1. Thank you for the hugs and thank you for reading my story

      Delete
  5. My first child had Anencephaly, You are a very strong woman

    xo

    Domesticated Breakdown

    ReplyDelete
    Replies
    1. Thank you, you are also a very strong woman

      Delete
  6. Big mommy hug from me as well. I'm glad you are sharing his story. I run a series called Our Land - where empathy and wonder rule. Please feel free to submit something about Dillion if you'd like. You can read the other guest posts from the link in my header if this is something you think you might be interested in.

    ReplyDelete
    Replies
    1. Thank you! I would love to write for your series, it sounds absolutely amazing! I will for sure go and check it out. It may take me a little while, because I am finding lately that my brain seems to be completely empty, but I will for sure get something written.

      Delete
  7. So inspiring. Have you read chasing rainbows blog?

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    Replies
    1. Thank you, no I have not read the chasing rainbows blog, but now I want to go look for it.

      Delete
  8. Dillion Craig, aka Boogie. Kept alive by Kimbra and Grace of God

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