UK Families

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Comment by Sally-Anne Wilkinson on October 7, 2009 at 11:52am

A petition has been started asking the government to recognise the importance of Attendance Allowance and Disability Allowance to disabled people. For more information please visit:

http://careandsupport.direct.gov.uk/greenpaper/execsum/

and if you would like to sign the petition please visit:

http://petitions.number10.gov.uk/AttendanceA/

http://careandsupport.direct.gov.uk/greenpaper/execsum/

Comment by Sylvie on June 22, 2009 at 4:14pm

Just to let you know that a doctor called Moira Blyth came to visit Emilie earlier todat. She is doing research on PKS in the UK, and she has contacted families through Unique. Because of the ethics rules in the UK, she is unable to contact families unless she is given prior permission through a group such as Unique, but if any UK families want to contact her, she has given permission for me to post her details on here.

Just a rundown of what she did - nothing complicated. She took blood and a mouth swab from Emilie, plus blood from Michael and I, and then just asked a few questions about her birth and weight, and any symptoms Emilie has had. She also took some measurements of her face and limbs, and lastly, some photographs of the markings on her body and her face. The more samples she can study the more valid the research. Do not worry about the blood test. She uses the 'magic cream' for the children and she is extremely gentle. At the moment she only has 14 families signed up. You can contact her direct on :

Dr Moira Blyth
Wessex Clinical Genetics Service
Mailpoint 105
Princess Anne Hospital
Coxford Road
Southampton
SO16 5YA

Email: moira.blyth@suht.swest.nhs.uk

Tel: 023-8079-6169 (Or you can leave a message with secretary on 023-8079-4503)

Comment by rob Millington on February 3, 2009 at 11:23am

hi Danielle , Michael too bites his hands and used to smack himself , he even has tough pads of skin on his thumbs and fingers where the scar tissue has built up. We have been told it's purely an action/reaction thing where Michael gets some pleasure from the feelings he gets when he does this apparent self-harming. Another thing he does is digging a finger into his eyesocket and pushing his eye a little , again getting some pleasure from it , whilst making us fearful he'll push the eye out !. I think most of these actions are purely the children investigating there own bodies and surroundings and not too much to worry about.

Rob& Annette

Comment by danielle ralph on November 30, 2008 at 3:35pm

Hi everyone hope u all are well morgan has started smacking herself and is bitting her hands loads does any of the kids do this as its starting to come a problem now ?? .

Comment by elaine and conor :) on November 30, 2008 at 6:43am

hi everyone , this is conor, we live in ireland, love to hear more about your little ones and how they are doing

Comment by tracy ayres on November 25, 2008 at 5:25pm

harley-jae has just started smacking me and his baby brother,and until now was a very placid child.just wondered if anyone could give me any advice on how to deal with it. thanks.

Comment by tracy ayres on November 25, 2008 at 5:16pm

hello this is me with my older son on the left and my 3yr old on the right called harley-jae who has pks.he was diagnosed in jan 06 just before his first birhday.he has come a long way and got further than the doctors first thought.we live in suffolk and would love to talk to other families in uk in the same position.

Comment by Cora Byrne on May 5, 2008 at 4:47pm

Hi all this is Billy and we live in Ireland. Billy is just over a year old and just been diagnosed so dont really know much about anything but hoping to learn and meet others who we can chat with. Billy is very healthy he has no illnesses so far hoping he stays this way. All early days for us so any advice would be greatly appreciated. Cora and Tony

Comment by Julia Bainbridge on April 7, 2008 at 1:46pm

Hi we live in Abingdon in the south of Oxfordshire. Matthew is 7 years old and has a younger brother Daniel who is 3.

Comment by Sarah Clarkson on April 5, 2008 at 4:29pm

Hi my daughter is Ella May Wynne. It would be lovely to keep in contact with other families. We live in Denbigh North Wales.
Sarah

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