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rachandryry1 is looking for help to choose a bike for Ryan. Does anyone have any idea's where i can find a suitable one..
Name: Rachel
Location: West Midlands
Groups: Buddy.
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About rachandryry1
Movies
Not to fussy but do like horror movies like paranormal activity etc
Music
All of the chart and up to date music, clubland and the occasional UB40
About me
Hi, My name is Rachel and i am 26 i've been married to Wesley 28 for nearly 6 years but together for 12 years... who says young love doesn't last hey.. We have 3 lovely boys Daniel 10 Ryan 3 1/2 and Lewis 8 months. Ryan was diagnosed with DMD on december 29th last year. That day will remain in our hearts and the hole in the floor we nearly fell in is still wide open.
You see i worked as a healthcare assistant at our local hospital and looked after a 21 year old lad with DMD 2 1/2 years ago. At that point i didn't really understand much about the condition and decided to look it up and gain more info.. I must say that i dedicated so much of my time to this young lad as i really felt for him, he was always smiling and just being a typical 21 year old boy talking about girls and music. I am grateful for the time that i spent with him and gained so much info from my experience.
When we were informed of Ryans condition it was a massive shock to say the least. At the time we were told i was 6 months pregnant with our 3rd little man lewis. And at the same time we were told that it wouldn't be a good idea to consider having any more children.. well 6 months pregnant what could i do. I decided to be strong as i had to for Ryan and the rest of my boys (that includes daddy too). We were very scared and felt very alone and we're still trying to get our heads around it now. When we found out that i wasn't a carrier it kind of lifted a weight of our shoulders but we still worried that lewis night have the condition too. We were looking forward to the arrival of lewis but we had shadow looming.. does he have what his brother has or is he going to be ok. We were asked if we would like to have him tested and we agreed. Thankfully his results were clear.
But then we think out of our 3 gorgeous boys only little Ryan was unlucky and that is something we struggle to come to terms with and we are very sure that his brothers will be very supporgtive and we'll all do everything we can to make sure he lives a happy life.
And live in hope that one day there will be cure so we'd like to say a massive thanks to everyone who is fighting to find one !!
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callumsmum
08:21, 28 Apr 12
Hi Rachel, things are ok for us here at the minute thank god and long may it last!! Callums still up to mischief and quite a handful lol!! Hope you are keepin well xx
Juggy69
08:54, 24 Nov 11
Granted there are times were you can't stop thinking about it, you just have to carry on regardless it, the hardest thing i found was telling my parents when we found out on the 17th of December that he had MD based on the info they gave 2 days later i decided he had DMD on the 7th Jan 2011 it was confirmed as DMD
Hopefully the Exon skipping trial will provide some positivity to everyone's situation here ;-)
Juggy69
11:00, 23 Nov 11
Hi Rachel all good thanks my boy is soon to be 3. So I personally think its easier while he is walking and trying to do things normal boys are we found out for deffo 7 Jan this year gutted but you have to carry on ;-)
callumsmum
07:31, 22 Nov 11
Hi Rachel, things are going ok, got an appiontment through for physio in December, been a while since we had an appointment!! Other than that Callum is a typical 2 year old, into everything and gettin lots of bumps and bruises! Nothin to do with duchenne....he's just slightly too adventurous!!Hope you are all well x
rbailie
09:37, 15 Nov 11
Hi Rachel & all the boys. Few people know what DMD is until they get the diagnosis. How amazing that you cared for a man with DMD before hand. I've just realised what RYRY is ! Keep happy. Follow the published Standards of Care protocols closely & demand the treatments from the clinic. It really makes a difference. Roy & family.
callumsmum
06:27, 15 Nov 11
Hi Rachael, so glad to hear you don't feel alone. Some days are very hard but we now know we have people here who understand, contact me any time, I;m also on facebook. Take care Laura x
callumsmum
03:55, 12 Nov 11
Hi thanks for the add, I'm Laura, I'm engaged to Paul and have 2 children, Caitlins 13 and Callum is 2.
