making muscle wasting history

Carter's Story Carter Barr......Born 20th February 2005

Lives in Dromara, N.Ireland with his mummy Julie, daddy Noel, big sister Jade and little brother Leon.

Diagnosed with DMD May 13 2008 age 3.



This is Carter, born on the 20th February 2005. On that day our perfect little family was taking shape… Daddy had his mate, Jade had her little baby brother and Mummy had got her "blue eyed boy". In the early days Carter was a happy smiley baby and had no problems of any sort. He was a great little eater and sleeper – what we and other parents called a "good baby."

As a baby Carter never crawled – instead he shuffled around on his bum, but you still had to keep a eye on him because he was quick as a flash! I never thought much of this but Julie has worried and she went to the doctors and they told her not to worry as a lot of babies never crawl. So - the months go past and it’s Carters 1st birthday and still no signs of walking. By 15 months Julie starts to get worried, but everyone – including me - tell her that he is fine – he’s just a bit lazy.

At around 18 months Carter walks his first little steps -Julie phones me at work and I was overjoyed at the news. So 3 months later Carter is walking most of the time but sometimes he would still do his "Bum shuffle." 6 months later his walking had not improved by much and he was constantly falling over. We were also worried that he could get up without pulling himself up using the help of furniture. Julie was really worried about this so she took Carter to the doctors. They checked him over and could see nothing wrong - only that he had been late to walk.



CARTER'S 3rd BIRTHDAY

Just before Carters 3rd birthday Julie was taking Carter to Mother and toddler groups, birthday parties and trips to the park, and she was noticing more and more that Carter was not as physically capable as the other little boys. He was unable to walk up steps and stairs or stay on his feet without falling over. Another trip to the doctors - same old story – don’t worry – it’s just because he was late walking.

On the 9th January this year our 3rd child is born - Leon (my name spelled back to front). We were all in cloud 9 - especially Carter - he called Leon his baby, even before he was born. So, for the next few weeks all eyes were focused on the new baby. The 20th February “yippee - Carter is 3”. All our friends were and family were at his party and we had a great time. Next day Julie told me she had noticed Carter falling a lot at the party and I agreed with her. We started to wonder if he had Perthes disease which I had suffered from as a child. So Julie took Carter to the doctors again, and he was this time referred to Royal Victoria Childrens Hospital to see an orthopaedic consultant.


THE ASSESSMENT

On 13th May 2008 Julie takes Carter to the RBHSC and after assessment the Doctor tells Julie that Carter has a problem but that he didn't have to see him again. He then said that he would take a blood test just to check a few things out, and Julie went home thinking that the trip had been a waste of time. How wrong was this! At around 9.30 that same night Julie checked the answering machine and we got a frightening, sickening message. We were told to get Carter out of bed, pack a overnight bag and travel to the Royal A.S.A.P. At this point Julie returned the call, and a doctor explained to Julie that Carter's ‘ck level’ was sky high and told her to write down the amount 23,796 and told her it should be 100. Then even more shocking he told her that Carter was at risk of a heart attack or even kidney failure. At this point we were crying out loud and running around like headless chickens. Our 9 year old girl Jade was awakened out of her sleep by the crying and she was confused and frightened. So we raced to the hospital as quick as possible when we got there we rushed in and told the nurse what the doctor had said on the phone. We were told to calm down and that the doctor had given us too much information. With that they put us in to a room. One hour later a doctor came and explained to us that Carter was at no risk of a heart attack or kidney failure and that he could go home.


THE DIAGNOSIS

One day later, on 14th May 2008 our dreams for Carter were shattered. We got a phone call to apologise for the "misunderstanding." Dr. Hanrahan, a neurologist then went on to tell us that with Carter’s ck levels being so high that he was 99% sure that Carter had DMD. Julie asked was he sure and he said coldly "I tell it how it is." He then told us that he would see us in 2 weeks time. So Julie came of the phone and looked up DMD on the Internet and we were completely devastated - crying like children, lying on the floor and being physically sick. This continued for days and I couldn't even go to work and when I did I broke down in front of my workmates.

Six weeks later I still cry to myself, but now I have got strength and hope, and that strength is my brave little soldier Carter. He is still the cheeky little rascal, the “what’s that for daddy,” “why you do that daddy,” my little boy who tells me, Julie, Jade and Leon that he loves us every night. I am prepared to battle and fight for him, and other boys like him. A few weeks ago Julie rang me at work to tell me that she had bought our local paper and that there was family near us going through the same situation just 6 miles away. I was shocked, and when I got home Julie said that there was a contact number in the article and asked if she should ring them and I said “yes” straight away. This is when Carter first met his new friend Sam. It’s a sad way for two boys to meet, but if you ever see these 2 boys play together sadness is not a word you would use. Watching them play does bring a tear to my eye. Every parent has a dream for there children, so when you get news like this things change .... but our love for our boys will never.


THE FUTURE

My dream now is a cure for Duchenne/Becker Muscular Dystrophy, and I truthfully believe that it will be fulfilled...

Please help us in our fight against D/BMD - even if you just tell your friends about this website.

This is a race against time for little boys like Sam and Carter!