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Update

Megan and I have had a busy time during half term.  We travelled to Cardiff to join in with the SDR march.  We stayed over the night before.  It was well worth the trip and Megan carried her banner all the way despite the strong winds!  There was a photo of Megan holding her banner on the BBC Wales News (internet version).  I have copied it on to the 'link'videos' on her website if anyone would like to read the article.   We also returned to Wales over the weekend to visit a lovely family who are fund raising for their daughter - I wish I could win the lottery to help them out!

 

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Update

Megan and I have a busy time ahead.  Driving up to Wales today as we are taking part in the SDR march in Cardiff tomorrow.  Megan has her banner ready.  Hope its not too windy as the banner is quite big!!  Then we are back in Wales over the weekend visiting a family who are taking the same journey as Megan and the family are busy fund raising at the moment.  Also Megan has been invited to Abe's sponsored walk in Winchester.  Abe is a georgous boy who we met through a friend of a friend and he now hoping to be accepted for SDR in St Louis. 

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The wonders of technology!

Yesterday Megan and I talked to a really lovely family from Lima, Peru via skype.  Their daughter is very similar to Megan and they would like her to have SDR as they have seen how successful SDR has been for Megan.  Just thought how amazing that the internet has brought two families together.  We hope to skype again :)

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SDR march in Wales

As you have probably read the SDR march in London has been cancelled but the march in Wales is still going ahead.  No children in Wales receive funding for SDR which Megan thinks is totally wrong so she has asked if we could go to the Wales march now that the London one has been cancelled - so we are now going to Wales on the 1 November!!  Megan has even designed a banner which we will now get made up ready for the march.

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Received letter from Department of Health

Received a reply from Jeremy Hunt MP (Department of Health) via our local MP Chris Huhne today.  It's really not worth typing up the whole letter for you all to see but he did put "if important new evidence is published at other times, NICE may decide to do a more rapid update of some recommendations" - how much evidence do they need?!!!!!!  So frustrating.

Also sadly the march in London has been cancelled - Megan was really looking forward to it :(

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Megan's letter to the Prime Minister

A couple of weeks ago Megan decided to write to the Prime Minister as she feels it is wrong that so many children in the UK are not getting funding for SDR.  She did mention in her letter that no children in Wales get funding whatsoever but her letter was really complaining about all the children in the UK.  Today she received a letter from 10 Downing Street saying that she should write to the Welsh Assembly!!!  As usual, not very helpful from the Government :(   Here are some of the comments Megan received from other SDR families when they heard Megan had written to the Prime Minister:

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Update

Megan has settled in really well at Wyvern secondary school.  She did say that she was pleased that she had her SDR before she started secondary school.  The only area of concern was PE and there was a possibility that I was going to go in and do her physiotherapy during PE sessions.  Fortunately Megan stuck with it and she does PE just like all the others.  Obviously there are things she can't do but at least she can join in when she can.

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Visit to our local MP

Today I went to visit our local MP to ask for his support for SDR.  He has written to the Head of NICE and the Health Minister to ask them to look at the NICE guidelines as they are inaccurate and because they are so negative alot of PCT's around England are not funding SDR - in fact NO children in Wales get funding for SDR, so children are either not getting SDR or they have to fund raise to pay for the operation.  The MP for Daventry is very heavily involved in getting NICE to change their guidelines and our local MP has also agreed to speak to the MP for Daventry.  

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Update

Megan had her annual check up with her consultant at Winchester hospital today. Last time she saw him he said he only wanted to see Megan again as he wanted to educate himself about SDR. When we turned up her usual consultant was poorly so we saw someone new. He was really keen to meet Megan as he had not come across an SDR patient before. He was really interested and asked lots of questions.

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Just wanted to share a couple of messages

Just wanted to share a couple of messages I received recently.  These kind of messages are the reason why I cannot stop supporting SDR:

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