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Blog

Welcome To Holland

Welcome To Holland

When I was pregnant with Eli we found out that he has Down syndrome and a heart defect. I read Welcome to Holland (a short story/poem for anyone w...

Lissencephaly Awareness

Lissencephaly Awareness

Hi everyone! Meet Harper. She's 2.5 years old and continues to prove her doctors wrong most days despite the odds. Harper was diagnosed with...

Harlequin Ichthyosis Awareness

Harlequin Ichthyosis Awareness

Brenna was born in December 2011 and unexpectedly diagnosed with an extremely rare and severe skin disorder called Harlequin ichthyosis. Brenna ma...

Cystic Fibrosis Awareness

Cystic Fibrosis Awareness

John and I welcomed a beautiful baby girl (Madilynn Paige) July 20th, 2016. She was definitely a gift from God. Just a few short days later our he...

Incontinentia Pigmenti Awareness

Incontinentia Pigmenti Awareness

Incontinentia pigmenti is a rare genetic disorder with very few research available. Annebelle was born a perfectly healthy nine pound baby, when s...

Wiedemann-Steiner Syndrome Awareness

Wiedemann-Steiner Syndrome Awareness

Emma was a scheduled cesarean section on 7/9/12 at Women & Infants in Providence at 39 weeks and 3 days following an uneventful...

Trisomy 22 Awareness

Trisomy 22 Awareness

Meet Chloe. She's almost three years old, though many thought she would never make it to birth. At a routine ultrasound at twenty weeks we l...