I am married to Suzanne, the mother of our very beautiful special children. We live in South Africa near the City of Johannesburg.
About my family:
We have two boys, Justin now 13 years old and Joshua 9 years old, both have DMD, we have a little daughter, Jessie now 8 years old, we do not know if she is a carrier yet, something the genetic council seem to think better to leave until she is older, we disagree but have no say in this as they will not test her. John Luke born, 19 December 2008. He is not affected by DMD.
Name(s) of child(ren)/individual(s) with Duchenne:
Hi there Colin,sorry for late reply-i have not been on this site for over a year-we missed Denver but i am contemplating Baltimore right now-i hope all is well w / you and your family-if i/we go and your there this year we will have to have that beer-Rich Poole
your familyis just beautiful Our son Caleb is 10 he walked in the room as I was looking at your site the yellow car Mom thats what I want when I get old enought to drive. great I say he is aware of his disabilty but just now that driving would happen. and not in a car like that. we adopted Caleb at birth knowing what he had mom knew she was a carrier. her brother just passed dec two years ago. I had not a clue as to how hard this journey was going to be this boy is my heart and reason to get up everyday such a love bug.everyday gets harder as the old body is stopping him but he never gives up as Im sure you know about these boys your little girl is quite a beautyand the little guy cute as well. I would say hope to meet your family one day but you live alittle far for a visit loved the pics. Penny
Hi Colin - Hoping that you might be able to assist with recommending a good Paediatrian that would be able to "manage" my grandson's condition? His cardiologist, Dr Kenny Govendragaloo has said this is now necessary as he has lost 1/3 of his heart muscle function and we're due to go to the Pulmonologist (Dr Ponday) next week Tues. as he thinks that the lung function is also not what it should be. Is there any Paed. in the South (Glenvista) that you know of who has a good knowledge of managing DMD? Do you have contact details for the Muscular Dystrophy Assoc in SA? I thought of maybe finding out from them as well? Trust all is well with your family? Regards, Lesley Henderson
I hope the Holidays were good to you there in South Africa. We are having spring-like days here (not Christmas-y at all) though in the teens at night. Had a great holiday with family here and in Dalls and am ready to move on to 2009. My daughter-in-law joined tonight, so she has taken the first step. Yea! Best to you and your famioy. Jean
Congratulations for your incredible family, you are superblessed too (4 angels).
Thank you so much for your comment, I know time counts and I am still trying to find out how to keep my son in the best shape until the treatment comes.
I would like to know more form your experience on DMD.