Always like to share an e-mail…January 10, 2008
I came across your website by just browsing around the internet, totally bored and somewhat saddened by the loss of our son recently who previously would have been referred to as being “different”. Wesley was born with 3 challenges, but more scarred by society because of the way people treat children and adults with disabilities. Wesley was born with Moebius Syndrome, Poland Syndrome and in addition he suffered from Hydrocephalus.
Last year he decided that he wanted to go for the Smile Operation and one of our best world renowned doctors, Prof Psaras who is based in South Africa, performed this operation which turned out to be a great success. Unfortunately Wesley died 2 months later after suffering a massive epileptic fit and too much pressure on the brain.
Back in South Africa we have quite a few children suffering from genetic disorders and many of them are suffering because of ignorance, lack of resources and very low self esteem. I was fortunate that I could get as much information as possible for Wesley and for my family by which we could empower ourselves about Wesley’s condition but so many are left undiagnosed, ill-treated and misinformed, often not by choice, but because of the great injustice in our country.
I can only imagine what a thrill it is for many to see pictures of themselves taken by you and to look past their differences. How different life would be if we all had photogenic vision to appreciate what we see and to be able to see the beauty in it all. I commend you for your great work and initiative you have for wanting to portray our fragile children the way they are and in so doing helping them to reach our and cling to their dignity and need to belong.
With the passing of Wesley I have developed a great need to take his memories further and together with Prof Psaras we are launching a Moebius Syndrome Foundation SA whereby we hope to help and guide parents and patients suffering from this disorder. Prof Psaras is also one of the founder members of The Smile Foundation and throughout the year they have Smile Weeks whereby they perform close on to 40 operations on children suffering from Cleft palates, Moebius as well as other facial deformities. It would have been a wonderful event if we could have someone with your expertise to do a calendar for us to aid us in our venture of launching our Foundation and aiding us to sell it off for funds. If only a few children benefit from your great work it is still a better place.
Regards and keep up the good work.