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Debbie & Leslie Jones

13 Grangefield Terrace, Rossington
Doncaster, Great Britain, , DN11 0LT
debbie.jones2@virgin.net


We have a 9 year old boy called Darran who has HPE. He does not display any of the facial deformities but he does have severe learning difficulties. He has low muscle tone which has delayed his physical abilities but he can walk and run about with the help of supporting boots and a knee brace. His fine motor skills are developing but his hands ae not well co-ordinated. He talks constantly and a lot of the time it is just nonsense but he can be quite amusing too! He has a brilliant memory and although he cant read or write he can memorise a book or song or even a video and recite it word for word. He has little concept of the world around him - time, danger, etc and will always be dependent on us. He is our only child and we are planning to have another baby. We are very apprehensive and would like to hear from others who have gone on to have more children and their experiences. We are trying to eliminate the possible causes - genetic tests proved negative so we know that's not the cause. I had a threatened miscarriage at 6 weeks and it was a twin pregnany. The other baby died at approx 30 wks gestation. I wonder if maybe that could have caused it. Perhaps it could have bben the affects of alcohol as I was pregnant over xmas but didn't know until the January - There are many scenarios that have gone through our minds as I'm sure all the other parents will feel the same. We look forward ot hearing from you. Debbie & Les Jones



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