Savannah’s Blog – Her Rare Reality Written by mum Sabrina for Rare Disease Awareness Day 2019

Meet Savannah one of our Inspiring ROHHAD Warriors; this blog was written Bg Savannah’s mum Sabrina for Rare Disease Day 2019 – This is her #RareReality “Savannah was born on March 27, 2007 at 7 lbs 11oz. She was a happy and healthy baby and we were absolutely loving life. Savannah was our third child […]

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Posted on 21st February 2019

Addison’s Blog – Her Rare Reality Written by mum Angela for Rare Disease Awareness Day 2019

Addison before ROHHAD Above My Miracle baby Addison was born in December of 2008. She had a rough start to life as she was a sole surviving twin at just 6-8 weeks gestation. During this time they had run all the normal tests and found that I was a high risk for having a baby […]

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Posted on 19th February 2019

Banner’s Blog written by his mama for Rare Disease Awareness Day 2019 this is his Rare Reality

Meet Banner Mazza Sears, born February 7th, 2015. 38 weeks, 6 pound 14oz 19 1/12 inches. Banner was an energetic and happy baby. Although shortly before his 2nd birthday, he began to have odd bruising, excessive black eyes, and wounds that would not stop bleeding. We were admitted to Hasbro Children’s and diagnosed with ITP. […]

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Posted on 18th February 2019