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Update Below! Here is a picture of little Jeremy Clark (RTS) 4th son of Rosetta and Steven and youngest brother of Joseph 14, Samuel 12, and Mathew 10. He was born in Brisbane, and lives in the Gold Coast in Australia. He arrived 24th April (7 weeks premature), this picture was taken in the 1st week of July while still in the hospital. He is home now, and has just had his hernia operation. He has only one kidney, and a hole in his heart - yet to be operated on. Still early days...and family are taking them one at a time. He is a happy little baby so far and only complains when something is really upsetting him. We will furnish more information soon - but you can send Email to Rosetta at rosetta@pjc.net or to me paul@pjc.net You could also link to Jeremy's web page - under construction at the moment at www.pjc.net/jeremy |
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We have very recently had another visit with our genetisist who continues to think Jeremy does not have RTS. We are at the moment not sure of any particular syndrome that he has, and in fact may just be his own thing! Anyway, to update you on his progress.... Jeremy spent his first 3 months in hosp, and came out bottlefed, using an infafeeder bottle with very thick milk. He had heart surgery in Nov 98 to correct ASD, VSD, PDA and Pulmonary valve stenosis. Since then he has started gaining weight (at 1yr weighs 6kg -13lb). He had surgery to correct glaucoma in his right eye, also in Nov. Once he started on solids in Dec, his constipation improved dramatically (also following months of using an anal dilater and suppositories!!). He eats really well, no trouble with gagging or vomiting, and is now taking thin fluids. Last night he sat totally unsupported for the first time and is oh so close to crawling. He does not yet babble, everything is AAAAHHHHHHH!! He is the sweetest little guy, very much loved by his big brothers and family. He has a wicked little giggle and great sense of humour. Anyway, at the moment we feel he probably doesn't belong amongst the others on your site, although he shares many similar problems as RTS children. It has been very enlightening reading about all the others - a world previously we had no knowledge of. We have an appointment with another genetisist in Nov, but we have no great confidence in a confirmation of any known syndrome - which doesnt worry us as we just take him as he is. I have attached a picture of him taken recently. |
Hi, this is Rosetta, mother of Jeremy in Australia. My brother sent you info on Jeremy last year and I thought it was about time I contacted you regarding our wee man. |
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