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Mrs Alison Griffith Female Preston United Kingdom: Favorite

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Started this discussion. Last reply by Mrs Alison Griffith Jan 28, 2009. 4 Replies 0 Favorites

About me:: Hi i am Alison mum to Connor who is 7yrs.
I gave up my full time yob and became a dinner lady nearly 2 years ago when we found out about Connors DMD

About my family:: I am married to my husband Carl, Connor id the only child and was diagnosed with DMD on the 5th Jan 2007

At 3:32pm on January 27, 2009, Lynne Taylor said…: Hi Alison
Welcome to the forum. I have only joined recently and really enjoying all the chat. I live in Cardiff, South Wales with my husband Jon, son Ross who has Duchenne and is 14 years old and my daughter Megan who is 10 years old. As my son is older than Connor i may be able to help if you come across any difficulties. Please let me know if i can help
best wishes
Lynne

At 8:20am on January 27, 2009, Jane said…: Hello Alison - still trying to find my way around this wonderful application!!

When I have will let you know. It seem a great place to talk and learn.

Regards to your family, Jane

At 8:48am on January 3, 2009, Danielle said…: hello, feel free to join the U.K group if you'd like to meet other families in the U.K http://community.parentprojectmd.org/group/familiesfromtheukunitedkingdom

welcome to ppmd, Danielle :)

At 12:34pm on January 2, 2009, Tina said…: Hi Allison
Mark will be 8 on the 26th of this month. He is doing well, also. Thank God! He is ambulatory, can run short distances, jumps, and ascends the steps without experiencing any difficulty, too. He does tired walking longer distances so we take a jogging type stroller along with us when we know we'll be walking long distances. We make the effort to conserve his energy when we can.

He takes deflazacort 18mg daily ( weighs about 65 lbs), daily caltrate, vitamin d 2,000 iu's daily, idebenone 150mg twice a day, one protandim once daily, and an occasional green tea extract. That's it.

Academically, he is doing well. Mostly A's and B's on his test with little studying.

He is short from the steorid and I know he'll be complaining about this soon since his peers are shooting up in height. He enjoys going to amusement parks, and being with his cousins. He loves Star Wars and plays video games. We don;t have him in any sports and he walks in PE. No running. Overall he is a happy kid.

At 12:44pm on December 31, 2008, Tina said…: WELCOME
MY SON IS 7 Y/O TOO. HOW IS YOUR SON DOING? DO YOU HAVE HIM ON A STEROID OR ANY SUPPLEMENTS?
TAKE CARE.
TINA