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Hi, my name is David Hughes and I am the father of two boys both affected by a rare 'orphan' genetic disorder. Both my sons are affected by X-Linked Alpha Thalassemia M/R Syndrome (ATR-X). There are less than 200 known affected boys in the world. Both boys are severely mentally and physically delayed; and, both are non-verbal. My 17 year old functions at about the age of a 3-4 year old. His brother, age 15, is close to the same developmental level.
Through my years of experience in raising the boys, I have learned the importance of having support with the day to day challenges of people affected by various health issues. Out of my own need, I have been involved with providing support to others by developing and managing over 600 on-line self-help support groups. This past year, I have created a new social network dedicated to providing information and support to others. You may want to use our site to help provide support for your own family, friends or patients. Check us out at http://healthsharegroups.org. We are also on Twitter and Facebook.
Please feel free to contact me if you have any questions or need assistance.
David Hughes
healthsharegroups@live.com |
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