Lorraine Davies
  • Female
  • Cheshire
  • United Kingdom
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About my family:
Husband Simon, Alex 14 has duchenne,Ethan 11 (my 3 stars). Alex was diagnosed April 2002.
Name(s) of child(ren)/individual(s) with Duchenne:
Alex
Age(s) of child(ren)/individual(s) with Duchenne:
13-18
City:
Cheshire

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Comment Wall (20 comments)

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At 7:17pm on January 3, 2013, kimmy watters said…

 dear lynne i hope you mind if  drop a note off to you my name is kimmy  watters i just would like to say your boys are very cute i am big support of  finding a cure to  dmd here  in the us.  how are your boys  doing sincerly kimmy

At 5:57pm on January 4, 2010, Lynne Taylor said…
Hi Lorraine
we had a lovely christmas thanks. Back to work today. All went well with the ventilation and it is very easy to get used to. We all feel like its always been here and Ross is feeling much brighter in the mornings.
wishing you a happy New year
luv Lynne xx
At 3:16pm on July 10, 2009, Lynne Taylor said…
Does Alex see an endocrinologist regularly? Hopefully it will just mean that the adrenal gland just needs to be monitored by regular blood samples. I would ask to be refered to the endocrinologist if you are not already. Ross has never seen one even though he has been on steriods for 7 years. I am going to ask to be refered to one at my next muscle clinic appointment. I went onto action duchenne website and they have some info on endocrinologist go to http://www.actionduchenne.org/duchennepedia/article/39/what-is-an-endocrinologist-and
Ross is really well at the moment, he was 15years old last month but thankfully not changed into a moody teenager yet!! Megan who is 10yrs old is moody enough so hopefully Ross will stay like he is. He is so funny he makes me laugh every day and such great company. I have emailed the committee members about contacting you re Calvert Trust holiday. If you do not hear let me know.
Take care
Love Lynne xx
At 6:21pm on June 29, 2009, Lynne Taylor said…
Hang on in there Lorraine
There are times when i felt like you as everything seem to happen at once and you end up with no energy left. It does get to a stage when you do stop fighting. When Ross started high school and we got the bathroom extension complete i finally found that everything was in place and I could relax and enjoy life again. I am at a good place at the moment. I know that there are difficulties ahead and it will become more stressful when Ross requires ventilation but at the moment I feel strong. Its always good to share so feel free to get in touch any time.
Make time for you because if you do not work nothing else does.
take care Lynne x
At 9:40am on June 28, 2009, Lynne Taylor said…
I would recommend the Balder powered chair as there are models that will enable Alex to stand up in so he does not have to use the standing frame. Contact Mike on 07825238670 or email him on michael@etacuk.com.
We are all well looking forward to our holiday to Brittany in August. Sorry to hear you are having problems with schools. We were lucky we have a special school for physical difficulties nearby but I do remember all the stress I had trying to get Ross into his local primary school. If you want to chat you will find my number on the DFSG magazine I am the contact family for region 8.
Take care
Lynne x
At 6:03pm on June 15, 2009, Lynne Taylor said…
Hi Lorraine
Just to let you know we have been successful getting full funding for a new powered wheelchair. As soon as they start fundraising in our area we can apply. Its a Balder wheelchair and is fantastic, the chair raises up, the back, reclines into a lying position and it manovers effortlessly. Well worth a look at. Ross has always had NHS wheelchairs which have been okay but you should have seen his face when he sat in a Balder. If you are interested let me know and i will give you the contact number of the rep.
Hope all is well with you and your family.
Best wishes Lynne x
At 9:49am on April 12, 2009, Danielle said…
My brother was a real wrestling fan too! We used to take him to the shows and we even found a way of sneaking back stage to meet the wrestlers. I have pics on my page of Frankie with the undertaker, and some WWE divas, lol although it looks like Alex would be too shy for that! lol
At 6:07pm on February 24, 2009, Lynne Taylor said…
Thanks for letting me know about MD Patrick Trusts grants. I have applied to them for a new wheelchair and i am waiting to hear so heres hoping. We are members of the DFSG actually we are the contact family for Wales. We went to Blackpool and the Calvert Trust with the group last year and had a great time. I really liked the Calvert Trust in Northumberland the scenary is out of this world, as it is in the middle of a forestry and reservoir. I thought i was in Canada! you also stay in amazing accessible log cabins with ceiling hoists, and wet rooms. The group are going again in May 2010 and we have put our names down already. I will put some photos on my page when i get round to it. I love all the photos you have added recently, particular the ones in Florida. We last went there in May 2007 with the charity when you wish upon a star and swam with the dolphins. You all seem to having a great time and remind me of my family - just getting on with it and having a good time
speak soon
Love Lynne x
At 2:06pm on February 19, 2009, Lynne Taylor said…
Hi Lorraine
Ross and Megan are off on half term too. We have had a good week went to see Pink Panther 2 yesterday it was really funny, Steve Martin is brillant in it. What a coincidence that you also have a westie. Our westie is called Mackenzie and she is 3 and a half years old. She is a little darling and although she was bought for Ross she is very much a family dog and loves everyone she meets. I think you were wise to wait until the physio comes to sort out the standing frame as you want the first experience of it to go well. Enjoy the rest of the week off. Speak soon x
At 9:09am on February 1, 2009, Lynne Taylor said…
Hi Lorraine
I often get mad at the wheelchair services and usually end up telling them what Ross needs for his wheelchair. They do not seem to be able to see out of the box and think all the boys are the same and need the same equipment. Not sure if Alex has his powered chair yet but if I can be of any help please let me know. Ross has had his for 6 years now and we have made numerous adaptations to it to make it comfy for him.
best wishes
Lynne x
 
 
 

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