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This is Susan Espinoza San Jose, California USA I am connected to Noonan Syndrome by my 20 year old son. Marcus has struggled with Noonan Syndrome, mostly because of his severe heart condition. He has HCM, pulmonary stenosis, severe mitral valve prolaspe, mechanical aortic valve which is now leaking, closed ASD, pacemaker, now his heart is starting to dilate. He was in Special Education his whole school life. He has gotten so weak that he does not work and goes to a community college 2 days a week for a ceramics class. He is permanently disabled. We never thought he would make it this far. Back in 1987 most babies with NS and a severe heart problem never made it past 3 years old, we are one of the lucky ones. I started the first Noonan Syndrome Support Group way back in 1989 in San Jose CA. I met Wanda back then as she wanted to start a group where she lived. As the group got bigger and bigger I was overwhelmed so Wanda helped me out and continued this wonderful group. It had just gotten to large for me to do it alone. That was such a long time ago. I still keep in touch with the original members, I also still get phone calls from new families in the Bay Area and around the USA. I am so glad to still be a part of this group and see how far it has come, Great Job Wanda, I could have never done what you have done. Thank you for all that you do, we all appreciate your hard work. TALK TO PEOPLE WHO ARE MOST AFFECTED BY NOONAN SYNDROMEWe operate a list service (discussion forum). If you would like to subscribe, and be a part of our family, send an e-mail to listserv@home.ease.lsoft.com with only the following command in the message body: subscribe noonan-syndrome
Wanda
Robinson,
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