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Fundraisers

Welcome To Holland

by Michelle Sullivan

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...
Posted in autism, awareness, birth diagnosis, cerebral palsy, chd, chd awareness, children's hospital, Down syndrome, heart defect, holland poem, holland story, holland tour guide, kids with special needs, nicu, picu, prenatal diagnosis, rare disease, special needs, spread awareness, welcome to holland

Lissencephaly Awareness

by Michelle Sullivan

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...
Posted in Lissencephaly, Lissencephaly awareness, special needs, special needs kids, spread awareness

Harlequin Ichthyosis Awareness

by Michelle Sullivan

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...
Posted in A different Beautiful, A different beautiful book, Harlequin, Harlequin ichthyosis, Harlequin ichthyosis awareness, ichthyosis, kids with special needs, special needs, spread awareness

Cystic Fibrosis Awareness

by Michelle Sullivan

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...
Posted in CF, CF foundation, Cystic Fibrosis, Cystic Fibrosis Awareness, spread awareness

Incontinentia Pigmenti Awareness

by Michelle Sullivan

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...
Posted in alopecia, cerebral palsy, focal epilepsy, genetic disorder, global delay, global developmental delay and refractory infantile spasms, Incontinentia Pigmenti, Incontinentia Pigmenti Awareness, infantile spasms, spread awareness, triplegic cerebral palsy

Wiedemann-Steiner Syndrome Awareness

by Michelle Sullivan

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...
Posted in spread awareness, Wiedemann Steiner, Wiedemann-Steiner syndrome, WS syndrome

Trisomy 22 Awareness

by Michelle Sullivan

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...
Posted in Glenn heart surgery, mosaic syndrome, MT22, spread awareness, trisomy, trisomy 22, trisomy awareness