Thanks for taking the time to visit my JustGiving page

I always freeze a little when I'm asked to "tell my story" I can feel the emotions that i felt at the time Criostai was diagnosed, the panic and the fear of those early days of being told your child has an incurable condition. a condition that has no treatment  and eventually would leave him a fulltime wheelchair user depending on me for all his needs. but its important to tell this story.

On the 7th of January 2013 Criostai was only 5 years old, i had had concerns that he wasn't able to ride a bike or run fast and he was unsteady on his feet, but we thought he was just a little lazy or had no co ordination or had flat feet.

I had voiced these concerns to my GP on several occasions but was always told I was being an over protective mother and was mollycoddling him, but I knew something just wasn't right and I insisted he be referred to the hospital to be assessed .

That would be the day I heard the words Duchenne muscular dystrophy for the first time!!!! I will never forget that day or the doctors face when during the assessment the looked at me an said "does he look like the rest of your children" shocked I asked what he meant he said "I think he has muscular dystrophy" he said we will run some tests and let you know" it was as blunt as that and he sent us on our way! Walking out of the hospital I phoned my husband and told him what the doc had said, not knowing what the condition was I assumed they  would prescribe him medicine and he will be fine, but I knew from Arts reaction it wasn't going to be that easy, I heard the fear in his voice and I looked down at my beautiful boy walking along beside me holding my hand and my heart just broke!

We had to wait another 3 weeks to get the results of the tests.

On Friday the 25th of Janurary 2013 we got the results we were dreading

Criostai had Duchenne Muscular Dystrophy. the doctor handed us a folder with leaflets on the condition and that was that!!!

For years we had tried to get Criostai some sort of treatment, we researched treatments,  anything we thought would help him but it never happened.

UNTILL NOW!!!!  almost 9 years of hoping and praying that some treatment would become available and it would be suitable for Criostai we have been given the most amazing opportunity take him to America to take part in a study that could be life changing for him.

Thanks to fight for Alfie and Project Care for the Rare for letting us join your fight against the monster that is DMD.....

All being well, Criostai will travel to America every 12 weeks for a year to receive this potentially life changing treatment.