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??