Meet Harley, this month’s inspiration for Sweedie Dreams. Harley is an 8-year old girl with holoprosencephaly (HPE). HPE is a congenital brain disorder caused by the failure of the prosencephalon (the embryonic forebrain) to sufficiently divide into the double lobes of the cerebral hemispheres. The result is a single-lobed brain structure and severe skull and facial defects. Harley was born with a cleft lip, flat nose, and microcephaly (small head circumference). She struggles with seizures daily that are very difficult to control. She also has difficulty feeding and breathing on her own, which has resulted in a feeding tube and a tracheotomy. Despite her many medical issues, Harley is a happy and fun loving girl. She loves music and dancing and she loves to be outside, particularly if water is involved. Big sister MacKenzie is her best friend and you can often find them doing art together.
The diagnosis came as a shock to Harley’s parents at birth as there were no prior signs of any issues during the pregnancy. They felt isolated and alone, not having any knowledge of HPE or what it would mean to Harley and their family. Thankfully they quickly came in contact with Families for HoPE.
Families for HoPE is a non-profit organization whose mission is to address the needs of families and children diagnosed with holoprosencephaly (HPE). They help educate families and individuals on how to better live with and manage children with HPE. They provide a support system, connecting families with one another and connecting children with HPE with one another, so they can help and encourage each other and form lifelong friendships.
Please join us in supporting Families for HoPE, the April Sweedie Dreams organization. For every Big Kid Bandana Bib you purchase during April, we will donate $1 to Families for HoPE.
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