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Are You #BOSAware?
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Rare Disease Day 2017
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A Decade to Diagnosis
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Where Have We Been??
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Siblings
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Facts About Epilepsy
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More Than You (Or I) Ever Wanted to Know About Genetics
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Be Kind
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Happy St. Patrick’s Day
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Songs of Love

Are You #BOSAware?

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.

A Decade to Diagnosis

 

It’s the eve of Campbell’s birthday and I can’t help but reflect on the last eleven years, particularly the last few months. This past October, we finally received a diagnosis for her unexplained symptoms after a decade of searching for answers.
I wrote about our journey in a blog post where I attempted to give advice to other parents facing the prospect of having a child with an undiagnosed syndrome. I talked about making peace with not knowing several years a go, yet I occasionally wondered if the day would come when we would have a “why” to the cause of her complex medical needs.

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Where Have We Been??

My mom asked me the other day, “Are you still doing your blog.”
I paused because I wasn’t sure how to answer. I haven’t posted here in months, even though I have updated the blog social media accounts sporadically. If you don’t already follow those, you can find us on Facebook and Instagram.

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Siblings of people with special needs see the world through the eyes of someone who knows unconditional love and believe in endless possibilities.

~Chasing the Cleavers

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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.

More Than You (Or I) Ever Wanted to Know About Genetics

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The last few weeks have been filled with several doctor appointments for Campbell and I’ll admit my brain is on information overload.
One of those appointments was to the geneticist that involved over two hours of updating her medical information along with listening to her doctor explain the newest advances in the fascinating but complex world of genetics.
I’ll be honest, I’ve had trouble with trying to explain everything to family, friends and her therapists, much less writing this blog post without confusing everyone and ultimately myself. Sometimes the more you rehash something, the more questions you have.

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“Be kind, for everyone you meet is fighting a battle you know nothing about.”

 

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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.