Friday, June 21, 2013

I LOVE someone with Hydranencephaly .... Help us spread the word!!!

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 that point forward doctors tried to convince me that My sons condition was not compatible with life. 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, after all I already had two healthy children and of course I was young and could always have more.


I of course refused and told Doctors over and over that I owed my son every possible chance at life and I was going 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), 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, 3 months, and 5 days. That is 9 years, 3 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 area " 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..


I ask you, 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 he was here on Earth.

There are 100's of children just like Dillion who are full of life, love, and laughter. Enjoying every day they are here, and there 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 (www.hydranencephaly.com) or the global Hydranencephaly foundation (www.hydranencephalyfoundation.org) and share this information. Share it on your blog, Facebook, via email, anything at all... Please help me to get the word out. June is almost over, but I ask... Would you be willing to write one blog post (linking back to either my page, or one of the pages mentioned), write one Facebook post, or send one email sometime during the next 9 days in order to help spread the word, and brighten the lives of these amazing miracles and their wonderful families?? 







36 comments:

  1. I made a post girl. He was precious as can be girl. He'll always be your guardian angel. :D

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    1. Thank you so much! I really appreciate it!!

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  2. I looked this up when I first read about Dillion. It's very rare, but your precious son sure beat the odds. You are an amazing mom Kimbra. I admire your strength and heart.

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    1. Thank you so much, I don't see myself as amazing but it was so sweet of you to say. Thank you from the bottom of my hert.

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  3. I will post this on my facebook.

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    1. Thank you so much the more this is spread the better, awareness is awesome and a powerful tool

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    1. Thank you! The more this is shared the better! I want to help as much as I can and I appreciate your help

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  5. Thank you for sharing. I know that my son is special needs and no matter what doctors told us, I would have given him the best life LIFE possible. Bless you. Sharing.

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    1. Thank you for visiting. I knew Dillion would have special needs and need lots of care, but I always wanted to give him the best life I could, and he changed my life in the process. Special needs children are amazing and have a real way of touching hearts.

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  6. Kimbra, this is beautiful. It made me cry. Thank you so much for sharing your and Dillon's story and the gorgeous pictures--and for spreading awareness.

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    1. Thank you, and I apologize for the tears but I am glad you enjoyed it : )

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  7. From amazing moms come amazing kids...so glad that Dillion lit up your life for over nine years.

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    1. Thank you, I feel so blessed to be his mommy

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  8. A story of strength, courage and love. Dillion must have known how much he was loved and how much his mom did and would fight for him!

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    1. Thank you so much Melissa, he was an amazing boy... He was my strength and my courage, I owe it all to him

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  9. I am glad you made the decision to give him a chance. My opinion is that even if he had only had a day to live, he would have deserved experience love and not being cut up alive in the womb that was supposed to keep him safe. I cannot imagine your pain having to lose a child, but I am happy for you and your family that you got those 9 years, 3 months, and 5 days with him. The pictures with his siblings, especially his little brother are so preacious, and Dillon will always live on in your hearts and memories!

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    1. Thank you Stephanie, my opinion is the same, even if we would have only had him a few hours, then I would at least have had a few hours of amazing, I always felt like it was my job to do everything I could to insure he had the best life possible

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  10. Just in tears reading your story. Dillon was your hero. I know you were his. He was so lucky to have you as a mom, a woman willing to be his champion when no one else would. I'm so sorry that you lost him at age 9, but am glad he blessed your life for as long as he did.

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    1. Thank you, I do not feel that I was his champion, I feel he was mine. He was an amazing blessing, the pain of loosing him was/is indescribable but he taught me more in his short 9 years then anything or anyone else ever could

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  11. What an inspiring post! Thank you for sharing this with us! I'm your newest GFC follower from the Pink Momma Blog Hop. :)

    I wanted to let you know I have a blog hop open right now! Hope you'll stop by, link up and spread the word so we can all make new friends.
    -Kay California DIY Diva

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    1. Thank you for reading and following

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  12. I will certainly share this! Spreading awareness about conditions like these is so important! Thank you for sharing your story. XO.

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    1. Thank you so much for sharing it is greatly appreciated

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  13. *smiles*

    What a beautiful boy.

    You are such a strong woman... I'll keep you in my thoughts.

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    1. Thank you for the thoughts and thank you for reading

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  14. Replies
    1. Thank you for the hugs, right back at you

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  15. What a handsome, happy boy! Thank you so much for telling his story! I'm so glad you posted the link in my comments. I, too, have a very special boy. Different circumstances but same challenges and triumphs. These kids teach us so much. It's like the world of special needs is a secret society and you have to go through a lot of pain to get there but once you arrive you are let it on the secret - the real and true meaning of life.

    You are an awesome advocate and Momma!

    :-)
    Shauna
    www.MommaCandy.com
    www.christiansjourney.org

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    1. You are so correct the world of special needs is very much like a secret society which teaches you all about life, love, pain, happiness, laughter, etc it is like the best classroom for life lessons and amazing journeys. Thank you for sharing the link to your special ones site I can't wait to visit

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  16. My favorite memories are watching Dillion play with his toy cars and how much he loved lip gloss/chapstick.

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    1. Thank you for sharing that... There were so many special things about Boogie, I will always remember his amazing love for all things Elmo and his huge smiles

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  17. I shared this on Google plus, even though June is over. Every month should be Hydranencephaly awareness month.

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    1. Thank you so much Eli, it is greatly appreciated!!

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  18. Just stumbled upon this, Kimbra! Thank you for sharing your sweet boy with the world and for helping to raise awareness in your community of blog followers, which likely will trickle over in to other social media platforms as well. We have some pretty amazing little angels guiding us with their big, bright lights. *hugs*

    Ali Harper
    Founder/President
    Global Hydranencephaly Foundation
    http://www.hydranencephalyfoundation.org
    President@HydranencephalyFoundation.org

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