Category - Images

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Rare Disease Day 2017
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Facts About Epilepsy
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Happy St. Patrick’s Day
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Songs of Love
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Spread the Word to End the Word
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She’s with me
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Happy Valentine’s Day
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Campbell getting a bone density treatment
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Campbell in waiting room
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Matthew with Campbell

Rare Disease Day is an international awareness-raising event. Campbell was diagnosed with Bohring-Opitz Syndrome in October of 2016 after a ten-year search for a diagnosis. There are fewer than 80 people in the world diagnosed with this rare genetic syndrome. To learn more, visit www.bos-foundation.org.  Share this post to raise awareness and consider making a donation. The Bohring-Opitz Syndrome Foundation is dedicated to improving the lives of those living with BOS through the establishment of a medical advisory board, awareness initiatives, and parent/patient advocacy.

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Just a few weeks ago, we celebrated Purple Day to raise awareness for epilepsy. Campbell has two types of seizures: partial seizures and primary generalized seizures.  She has also gone into status epilepticus which is a life-threatening seizure.  Earlier this week, she experienced a seizure that lasted over 30 minutes which is considered status epilepticus. Fortunately, she pulled out of it and only required a brief stay in the ER but arrived in an ambulance. She loves to make a grand entrance. I thought I’d take some time to share some interesting facts about epilepsy.
  • 65 million people have epilepsy in the world
  • 3 million of those live in the United States
  • 1 in 26 people in the US will develop epilepsy
  • 150,000 new cases of epilepsy just in the US each year
  • ONE-THIRD of people live with uncontrollable seizures (meaning no medicine or other treatments work)
  • 6 out of 10 people have no known cause for their seizures
To learn more about epilepsy, visit www.epilepsy.com.  They have wonderful resources and information for both individuals with epilepsy, parents and families.

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Happy St. Patrick’s Day from our family to yours!  This has always been one of our favorite holidays because of my grandfather.  He was proud of his Irish heritage and loved celebrating the day which rubbed off on us. March is also Cerebral Palsy Awareness Month where everyone is encouraged to wear green.  To learn more, click here.                                             

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Songs of Love is a nonprofit organization dedicated to providing personalized uplifting songs, free of charge, for children and teens currently facing tough medical, physical or emotional challenges. This is Campbell with her personalized song that she has enjoyed over the years. Visit their website at www.songsoflove.org to find out how you can get your child a personalized song or donate to an awesome charity.

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Today is Spread the Word to End the Word which is an effort to raise consciousness about the hurtful effects of using the word retard(ed). To learn more about the movement visit www.r-word.org where you can take the pledge to help build communities of inclusion and acceptance for all people.  Our family has participated in this movement since it’s inception in 2009.  While some critics of the campaign argue that it promotes censorship, the campaign’s main purpose is to raise awareness that the word retard(ed) is offensive so that people will think before they speak.  Words have power as shown in this video (this has strong language that may not be suitable around children but needs to be heard by adults).  It’s not censorship, it’s civility.

IMG_0756Campbell enjoying an evening out with the family at a local restaurant.  This picture reminds me of a song by Collin Raye called “She’s With Me. He wrote it for his granddaughter who is in the video and has since passed away from Rett’s Syndrome.  He captures many feelings that loved ones of children with special and complex needs share. Click here to listen to the song on YouTube. 

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Campbell and Matthew on Valentine’s Day 2009

“Sometimes being a brother is even better than being a superhero!” Marc Brown (author of the children’s series, Arthur)`

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Campbell getting her first bone density treatment at Cincinnati Children’s Hospital Medical Center

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Campbell in the waiting room at Cincinnati Children’s Hospital decked out in her University of Kentucky blue and white.  With custom UK AFOs (Ankle Foot Orthosis) of course!

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Matthew with Campbell

“If you want to know how to treat a child with special needs, look to their sibling.  They will show you.” – Unknown