About Bobean.

Introducing Bobean!
Introducing Bobean!

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Bobean (Otherwise known as Ali), was born on December 21, 2009 weighing 10 lbs 6 oz.  She was born with “wet lung” and transported by air ambulance to the nearest children’s hospital.  While in transport, the flight crew discovered that she had Supra Ventricular Tachycardia (SVT).  She was admitted to the NICU for what would become a 6 week stay.

Three days after being admitted, Ali started on a very strong heart medication and for the following 6 days was given an overdose. This accidental overdose made her a very sick little girl but thankfully, she was able to recover.

In April 2010, Ali was diagnosed with Costello Syndrome.  This is a very rare genetic syndrome that affects only 200-300 people worldwide.

Ali lives with her mom (that’s me, Jill), her dad (Jason) and her incredible older sister Madi.  We’ve had our share of ups and downs but together we can get through anything!  This blog is the story of one of the most amazing, happy little girls ever and about the people that love her.  This is Ali’s story!

 

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A blog about living life one day at a time with an amazing little girl with Costello Syndrome.