Emma is 8 yrs old. From birth we have known she has a very rare genetic condition called LEOPARD Syndrome also known as Noonan Syndrome with Multiple Lentigines. This is a condition that her father, aunt and grandfather had/has as well. As a result of this syndrome she has several medical challenges including ; Hypertrophic Cardiomyopathy, Left Bundle Branch Block, Pulmonic Stenosis, delayed growth, vision and dental issues. Every night she takes a dose of a Beta Blocker and must undergo a shot of growth hormone. The growth hormone has more to do with proper development then it does with height at this point.
While we face thes challenges with Emma, we consider ourselves furtunate. This condition is so rare, some estimates have the total at 200-300 world wide. We have met others that have had much more severe cardiac issues and others that have severe mental impairments. Those of you who have met Emma know that she is a bright, happy and optimistic child. She has become as fierce an advocater for her condition as we have been.
Which brings us to this summer. Her condition is part of a family of conditions known as RASopathies. In Orlando, Fl., there is going to be a Medical/Educational Conference where we can learn more about what to do now and in the future to help Emma with her condition. We need to raise $4000.00 to get there and we are asking for your help. We also ask if you can repost this to your friends and family also. We want to thank you in advance. Love Emma, Erin, Paul and Sherrie Grant.