Love for Lucas- Chiari Malformation Awareness

I’m going to do something a little different today. But like every post, it’s staying true to my heart.

And like the saying goes, “If you think my hands are full, you should see my heart”!

I’m hoping this post will raise awareness to a condition that so many people have but goes undiagnosed daily.

Lucas

Meet Lucas. Clearly, he’s the biggest ray of sunshine you’ll ever see coming from such a small body. He was recently diagnosed with Chiari Malformation. A condition where brain tissue extends into the spinal canal. This results in chronic pain and a multitude of symptoms but despite that, this little trooper just keeps on smiling! He went in for surgery this morning, a very big surgery called, “Posterior Fossa Decompression Surgery”, where they removed a small portion of the bottom of his skull and his c1 vertebra to allow for additional space for the cerebrospinal fluid to circulate. What this means for Lucas is no more headaches, it will be easier to breathe and swallow, improved balance and many more opportunities to spread that sunshine and sweet personality! I’m asking for prayers, good vibes, anything you’ve got for this little trooper and his family. Recovery will not be easy but we want him to have the best shot possible! #loveforlucas

About Chiari Malformation

chiari_malformation

chiari-malformation posterior fossa decompression

Many people go undiagnosed and even suffer from symptoms later in life. In the past, it was estimated that the condition affects about 1 in every 1,000 births. However, the increased use of diagnostic imaging (X-ray, MRI, and CT scan) has shown that Chiari Malformation is even more common. Some children who are born with the condition may not even show symptoms until adolescence or adulthood, if at all.  Lucas’s family thankfully found out early on. But until now, they had never even heard of Chiari Malformation. Neither did I for that matter! After researching this condition, I couldn’t get over the amount of symptoms one could potentially suffer:

  • neck pain
  • balance problems
  • muscle weakness
  • numbness or other abnormal feelings in the arms or legs
  • dizziness
  • vision problems
  • difficulty swallowing
  • ringing or buzzing in the ears
  • hearing loss
  • vomiting, insomnia
  • depression
  • headache made worse by coughing or straining
  • hand coordination and fine motor skills may be affected

This is no quality of life. And many of these symptoms could be mistaken for other conditions. Some doctors haven’t even heard of Chiara Malformation. That’s why it is so important to spread awareness. And while surgery may relieve or prevent some symptoms, currently, there is no cure…but there IS hope!

Join me and others as we spread awareness for Chiari Malformation.

Please Share, Tweet, Pin, Instagram, Facebook, and Google plus the heck out of this post…because we all deserve the best quality of life!

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