BENEFITING: Little Miss Hannah Foundation
EVENT DATE: Feb 25, 2017
All monies raised during this fundraiser will support Little Miss Hannah Foundation http://littlemisshannah.org/.
Rare Disease Day is always the last day in February, but there are events happening all over the world that lead up to that day. This 5K, Vegas Cares About Rare, is one of many events happening to support Rare Disease Day.
Richard and I will be participating in this 5K in honor of our daughters, Emalynn and Jocelynn. Emalynn will be 3 years old on May 21, and Jocelynn will be 1 year old on March 14. They live with us and our 2 fur babies in Running Springs, CA. They were both diagnosed with Dandy Walker Variant before they were born. I was given the option to terminate the pregnancy both times. I was told that their prognosis would be very poor and their quality of live would be awful. I had to give them a chance, and I’m so glad I did. They have been proving doctors wrong since before they were born. Since birth, though, it has been a huge struggle. We’ve been on a constant roller coaster ride with multiple diagnoses. When Emalynn was born, she was floppy, blue, and not breathing. She’s since been given the diagnoses of Cerebral Palsy, Cortical Visual Impairment, Central Sleep Apnea, Optic Nerve Hypoplasia, Hirschsprungs Disease, Joubert Syndrome, and a heart murmur. Jocelynn was born via elective C-section. Since her birth, she has been diagnosed with Optic Nerve Hypoplasia, Hirschsprungs Disease, Liver Fibrosis, and Joubert Syndrome. Emalynn has gene mutations on her MKS1, BBS10, and C5orf42 genes. Jocelynn’s gene mutation lies on her C5orf42 gene. Emalynn is currently undergoing further genetic testing.
I created a Facebook page for them. You can find it here: https://www.facebook.com/EandJW/