Sophia Adamo - ROHHAD Syndrome

Sophia was born October 19th, 2004. She was diagnosed with ROHHAD Syndrome on December 18th, 2008, and her mom began researching this unknown disease. She stumbled upon Haven's site and quickly we began to talk and share information. She joined our family with open arms.

Sophie now battling this officially for over 2 years has seen her share of many hospital stays, sleep studies, pokes of needles, blood taken. She has endured almost a dozen hospital stays for Pneumonia alone in the past two years.

From March 2009 through January 2010 Sophia has not been able to lose the weight even though on a strict diet - as all ROHHAD children are. She has grown 1/2" and she had a wonderful 5th princess birthday.

As of last week Sophia is now on 12 different medications a day and was recently put on blood pressure medication and is in constant visits with her Cardiologist.

Like all of our families - Sophia suffers from a life-threatening disease that at any minute could take her life. Due to the unknown factor of this disease she has been turned down from Make-A-Wish but her mom continues to push her paperwork through in hopes of giving Sophia a vacation from doctors and hospitals and show her what being a kid is like.

I have watched Sophia grow and love this little girl. Her mother has endured so much with trying to work and take Sophia to the doctors and hospitals on her own. Not to mention she is 1 of 6 children. We don't know how her mom does it but we're here to support her!

Sophia has a site on Caringbridge which her mother updates frequently - I urge you to take a few minutes out of your day and read about our Sophia.

WE LOVE YOU SOPHIA AND MAUREEN!!

Check Sophia out HERE or click on any one of her photos!