Families from the U.K (United Kingdom)

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Families from the U.K (United Kingdom)

A group for families from the U.K to chat about their families.

Location: united kingdom
Members: 46
Latest Activity: Mar 23, 2016

Discussions

GOSH and steroids

Started by lisa burke. Last reply by lisa burke Oct 31, 2011. 2 Replies

Please watch and pass on - my poem to my son.

Started by Sharyn Thompson. Last reply by Christine Davies Oct 28, 2011. 2 Replies

wheelchair swings

Started by claire holloway. Last reply by anne Mar 1, 2009. 3 Replies

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Comment by *annette* on January 23, 2009 at 3:43am
HIya Cheryl,

My son Joe was a prem baby too...no reason why? wonder if there is a link? He wasw diagnosed in May 07 when he was 5. Physically he's great, emotinally is another story.

Iam so pleased to hear Adam isdoin so well :-)

x
Comment by Cheryl Markey on January 22, 2009 at 11:44pm
Hello everyone! My name is Cheryl Markey ( recently remarried on May 10, 2008 ), my son Adam who is 23 yrs. old has Duchenne....he was born in England while we were stationed at RAF Lakenheath with his dad ( he was US Air Force ). Adam was born 3 months early at h ome and whisked away once the emergency staff arrived....he was taken quickly to the base hopsital then sent to be taken care of in the Wroxham Baby Intensive Ward at the Norwich Norfolk Hospital....he was born Oct. 20, 1985 ( due date was Jan. 3, 1986 ), he received excellenat care while in Norwich. He later returned back to the base hospital once he was off of oxygen, gained some weight and was able to be tube fed. Adam won his first life's battle after being born prematurely now he has 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!

After leaving England we were stationed here in the states at Myrtle Beach A.F.B South Carolina, this is where we learned of Adam's diagnosis of DMD ( we have no family history ), we have been involved with MDA and other organizations trying to spread awareness and raise funds for the needed research to find the cure for our boys ever since then!
We now live here in Presque Isle Maine, we moved back to Maine from South Carolina to bring Adam closer to relatives, I had moved around as a military brat ( dad was in the Air Force too ) and didn't know my grandparents much or other relatives ( aren't close today with them ), so, wanted Adam to know what a grandmother and grandfather were and to make some special memories along with his aunts/uncles and cousins. His dad is no longer in our lives, he lives in California now. I was a single mom from 1993 to 2008 when I remarried.

I am Adam's 24/7 caregiver ( I am a Certified Nurse's Aide ). Adam walked till he was 14 yrs. old........had a harrington rod placed in his back to correct neuromuscular scoliosis when he was 17.....other than having DMD he is a very healthy young man. He was on Predisone for a couple of years, saw some change in his strength, I later weaned him off of it. Tried leg braces he didn't like them so, he didn't use them, he doesn't take any vitamin or natural supplements, no green tea or other things I have read on hear that are given to boys nowadays. Adam just eats a healthy diet, isn't much of a junk food junkie, gets his flu shot every year, wears shoes all the time Physical Therapists he has been seeing at the MDA Clinic since he was little asked what we do different because Adam's feet at 23 yrs. old aren't contracted or curved inward, all I could tell her is he always wears shoes just like the rest of us who don't have Duchenne. I advocate to keep shoes on their feet, keeps them from breaking their toes etc. and they act like ankle braces, he gets one PT session a week. He is doing well compared to some of the younger boys we know personnally here in Maine. I suggest to keep them busy, keep them out in the public, don't baby them, when they fall or when you fall.....Pick Yourself Up, Dust Yourself Off and Start All over Again!!!!!

Hope all is well with you and your love ones! Happy New Year!
Cheryl
Comment by Johanna on January 8, 2009 at 5:48pm
Sorry Sandra..... how rude of me "Hello" xx
Comment by Johanna on January 8, 2009 at 4:23pm
Sharyn it might be worth phoning through to the appointments dept at GOSH, there was a mix up in Archie's appointments when Hammersmith moved to GOSH and they managed to bring my appointment forward by 3 months.
Comment by Sandra Fitzpatrick on January 8, 2009 at 1:30pm
Hi everyone,

I joined here about a week ago and haven't properly introduced myself yet. I'm Sandra, married to Chris, and my children are Lauren, 16, and Liam 7 (8 next week). Liam was diagnosed with DMD in April 2006 when he was 5, and I can't believe how quickly those 3 years have flown by. He started taking Prednisolone daily in August 2005 and although he wasn't particularly struggling (which explains his late diagnosis) the difference was amazing. He still maintains great mobility and can do most things quite well and is currently showing no signs of weakening.
I already know some of you from other forums, and the Action Duchenne conferences, and look forward to getting to know and share experiences with others.

Sandra xx
Comment by *annette* on January 8, 2009 at 12:15pm
sounds about right Sharyn..unfortunately!
Comment by Sharyn Thompson on January 8, 2009 at 12:04pm
Mind you, that said, at least everything's finally coming together. Light at the end of the tunnel. . . .
Comment by Sharyn Thompson on January 8, 2009 at 12:04pm
I finally got an appointment this afternoon for Prof Muntoni at GOSH . . . . . . . . . in JUNE!!!! I can't believe I have to wait 6 months for an appointment!! Is this how it normally is or should I be able to ring up and get an earlier appointment?
Comment by KellyR on January 7, 2009 at 8:37am
I have all the same usernames and passwords for my dmd stuff! I'd forget otherwise.

I find birthdays tough, particularly as Aidan's cousin Ryan is only 5 days younger than him. Ryan towers over him, is so much faster, stronger etc. I often find it hard when they are playing together...thinking one is destined for a life in one direction, whilst the oher is already going backwards.
I really hope Archie has a great birthday, and you can enjoy it as much as you can. Sending lots of love...xxx
Comment by *annette* on January 6, 2009 at 5:00pm
Hiya!!
WOW 6 next week!!! Totally understand how you're feeling so big hugs ((((((j)))).

xxxx
 

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