Comment

Comment by Nadine Foley on May 7, 2009 at 11:19am

Hi guys, I can't seem to log on to the action duchenne site, a different one keeps coming up and I can't see a discussion board on it. Have I gone nuts or has the site been updated? My log on wouldn't work on it either!! I think I really am going insane.....

Comment by Sharyn Thompson on April 8, 2009 at 4:51pm

Hello to both of you! I love this site!

Comment by Ian Anthony Griffiths on April 8, 2009 at 4:50pm

Thanks Annette! xxx

Comment by *annette* on April 8, 2009 at 4:45pm

hiya Ian and rebecca... :-)

Comment by Ian Anthony Griffiths on April 8, 2009 at 4:43pm

Hi guys I finally joined this forum too lol

Comment by Rebecca B on March 30, 2009 at 5:49pm

Hello All,
I've finally got round to joining the group. Never enough time what with FB and AD forum !

I am Mum to George who is 5yrs, diagnosed at 3.5 yrs. I also have a little girl tilly who is 2.5 yrs. We live in Suffolk and share care with our local hospital and GOSH.

Please visit the group I have started " Cycle the Americas" - friends cycling 20,000 miles for Duchenne, and invite everyone you know!

ttfn
R

Comment by anne on January 24, 2009 at 11:04am

hi cheryl
nice to meet you
your words ..... a greater battle known as Duchenne! How is everyone doing on your Duchenne Journey I like to call it. I know some of you are just starting out on your Duchenne Journey and others are further down the path. Some of us have people in our lives that help support us emotionally and some don't! It is not a easy journey, it is a life of roller coaster emotions being a pioneer in my Duchenne Journey I can't sugar coat it for anyone.....it is a hard and long tiring journey. Our boys are worth every bit of it, their smiles are our strength!
....really touched me

our journey seems sometimes full of heartache and battles... it's the triumphs and the love and 'smiles' that make it all bearable

my son was diagnosed at 5 1/2 ... never heard of dmd or suspected anything was 'wrong' with him (he's my forth child)
i was 'floored' ... it's taken me 5 years to pull myself together and now i can even say dmd aloud without crying ... a personal triumph!!

best wishes to you and your family
and belated congratulations on your marriage
anne x

Comment by Lynne Taylor on January 24, 2009 at 8:29am

Hi Cheryl
Its great to hear from you. I might need your advice in a couple of years when Ross goes from Paediatric to Adult services as i have heard grim stories here in Cardiff South Wales about transitional care
best wishes
Lynne

Comment by Cheryl Markey on January 23, 2009 at 2:22pm

I'll leave a reply here to the comments from Lynne and Annette, thank you for commenting back to my 1st reply.....great hearing from both of you.....I used to be on PPMD awhile back then went into different avenues then something last week told me to check back on and see what has been happening.......great changes and it's great to be back on......yes, the earlier years absorbs your time and energy with Dr.'s etc., trying to learn all we can about Duchenne and what we can do medically, physically, emotionally, educationally, and raising awareness and funds for the cure! Then we do settle down and start enjoying the time we do have with our sons! Sometimes many get so wrapped up in the things I mentioned above that we aren't enjoying what we should be. As for premature babies, don't think there is any connection. Adam was diagnosised when he 4 1/2 years old. Joined this forum/group because where we had once lived in England and Adam being born over there.
Enjoyed our 3 yrs. over there, of course Adam doens't remember as he was 5 mos. old when we came back to the states. Toured all over Europe while over there.

Cheryl

Comment by Lynne Taylor on January 23, 2009 at 11:28am

Hi Cheryl
Welcome to the forum. I am new to the forum too and really enjoying all the chats. My son Ross is 14 years old and i have know since he was 9 weeks old that he has Duchenne as we doing newborn screening here in Wales. I found the early years very hard because there was so much to do and so many people to see!! However since he has gone to high school it has settled down and i am beginning to enjoy my life more. I just love my morning chats with Ross getting him ready for school and we have a great laugh together.
Will chat some more soon Ross is due home from school any minute so i will be busy for a while
Love Lynne x

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