Our mission is simple! These families have a lifetime of hurdles they will face with a Hemi child. Hemi is a disorder which means there is no cure. As a mother of a child with Russell-Silver Syndrome experiencing the undergrowth side of Hemi, I am faced with the fear of not knowing what the future holds for my child. I take comfort in the assistance and information that I have received from support groups and physicians. Families with a Hemi child will have a bumpy road ahead with several doctor appointments, blood draws, tumor risks, shoe lifts, leg length correction surgeries, purchasing two different sets of shoes to accommodate foot size difference and massage therapy, just to name a few. Insurance does not cover 100% and sometimes not at all. Dedicating my time and starting this charity is one of the best things I have ever done with my life. This charity will not only provide information and assistance to these amazing children and their families but it will also shine a light & make the public aware of this genetic disorder. Our funds are raised and distributed internationally. Please help us, help a child with Hemi!
The Cortland Standard (Front Page Article) - October 16, 2013
(From Left to Right)
Vice President/Marketing Manager - Jaime Rumsey
President - Pamela Cullip (Holding her daughter Brielle)
Secretary/Treasurer - Sheila Tarbell