Fight-For-Alfie
Donation protected
On the 26th September 2012 our lives changed forever!!
It was truly amazing!!
Our 6lb 9oz little bundle Alfie came splashing into the world after an incredible water birth..
Life as we knew it would never be the same again swapping nights out for nights in with four hourly feeds and dirty nappies and we couldn't have been happier.
Alfie was a happy smiley little character and reached all his milestones we never had a reason to think anything was wrong.
He started walking when he was 13 months old and would fall and trip which we presumed was part and parcel of having a new toddler in the house..
This continued so we took him to the doctor after countless trips the doctor eventually sent us to a physio..
Alfie was 18 months old on his first trip to physio, they told us he was flat footed, that he was doing things he shouldn't be climbing, running etc and that's why he was constantly falling they were wrong!!
From Alfie could talk he complained of sore knees.. No child is able to understand at such a young age and wouldn't complain for no reason..
After numerous trips back and forth we just weren't happy so changed his doctors.
Earlier on this year Alfie caught a bug that he just couldn't shift, he broke out in what we thought were chicken pox again back to the doctor only this time he sent Alfie for blood tests..
Just routine right????
His blood test came back that his CK levels were very high, still not quite sure the doctors told us they would monitor his blood as it could have been because of the bug..
And that's the start...
Our gorgeous 3 and a half year old boy would have to make weekly trips to the hospital to give blood..
Luckily Alfie didn't mind he said he was giving it to the trampires..
Alfie loves ghosts and ghouls Halloween is his favourite time of year..
In May they said they would have to do a genetics test as they thought he had a problem with his muscles and I just knew deep down in my gut the outcome wasn't going to be a good one..
Mummy's instinct!!!
Summer was tough we tried to carry on as normal visiting Alfie's favourite place cranfield and even going on holiday but it was always there.
You see when you hear your baby might be sick it never leaves you morning to night thinking worrying praying it's wrong..
Results...
Alfie's first result came back that there was no deletion so or duplications great right..
No they had another test to do again for a muscle disease bloods, biopsies, hospitals, orthopaedics, neurologists,nurses my baby shouldn't have to do any of this....
Alfie started school, celebrated his birthday, enjoyed Halloween and then came the news no parent wants to hear he does have Duchenne Muscular Dystrophy.. Heartbroken!!!!
We have felt every emotion you can imagine over the last few months but there is one that keeps us going..
DETERMINATION!!
We ARE DETERMINED to SAVE OUR BOY
We ARE DETERMINED to FIND A CURE
We ARE DETERMINED to let him lead a NORMAL LIFE
We ARE DETERMINED to FIGHT ALL THE WAY
and this is where we changed again, our goals are different our lives are different but we will fight as hard and as strong as ever for our wee boy.
And this is where we need your help we need to raise funds for stem cell treatment, gene therapy and hopefully one day there will be a trial he is eligible for.
Alfie is soon to start constant medication to make his day a little easier..
He will eventually need specific aids to help him get through his day..
Please please please help us xxxx
It was truly amazing!!
Our 6lb 9oz little bundle Alfie came splashing into the world after an incredible water birth..
Life as we knew it would never be the same again swapping nights out for nights in with four hourly feeds and dirty nappies and we couldn't have been happier.
Alfie was a happy smiley little character and reached all his milestones we never had a reason to think anything was wrong.
He started walking when he was 13 months old and would fall and trip which we presumed was part and parcel of having a new toddler in the house..
This continued so we took him to the doctor after countless trips the doctor eventually sent us to a physio..
Alfie was 18 months old on his first trip to physio, they told us he was flat footed, that he was doing things he shouldn't be climbing, running etc and that's why he was constantly falling they were wrong!!
From Alfie could talk he complained of sore knees.. No child is able to understand at such a young age and wouldn't complain for no reason..
After numerous trips back and forth we just weren't happy so changed his doctors.
Earlier on this year Alfie caught a bug that he just couldn't shift, he broke out in what we thought were chicken pox again back to the doctor only this time he sent Alfie for blood tests..
Just routine right????
His blood test came back that his CK levels were very high, still not quite sure the doctors told us they would monitor his blood as it could have been because of the bug..
And that's the start...
Our gorgeous 3 and a half year old boy would have to make weekly trips to the hospital to give blood..
Luckily Alfie didn't mind he said he was giving it to the trampires..
Alfie loves ghosts and ghouls Halloween is his favourite time of year..
In May they said they would have to do a genetics test as they thought he had a problem with his muscles and I just knew deep down in my gut the outcome wasn't going to be a good one..
Mummy's instinct!!!
Summer was tough we tried to carry on as normal visiting Alfie's favourite place cranfield and even going on holiday but it was always there.
You see when you hear your baby might be sick it never leaves you morning to night thinking worrying praying it's wrong..
Results...
Alfie's first result came back that there was no deletion so or duplications great right..
No they had another test to do again for a muscle disease bloods, biopsies, hospitals, orthopaedics, neurologists,nurses my baby shouldn't have to do any of this....
Alfie started school, celebrated his birthday, enjoyed Halloween and then came the news no parent wants to hear he does have Duchenne Muscular Dystrophy.. Heartbroken!!!!
We have felt every emotion you can imagine over the last few months but there is one that keeps us going..
DETERMINATION!!
We ARE DETERMINED to SAVE OUR BOY
We ARE DETERMINED to FIND A CURE
We ARE DETERMINED to let him lead a NORMAL LIFE
We ARE DETERMINED to FIGHT ALL THE WAY
and this is where we changed again, our goals are different our lives are different but we will fight as hard and as strong as ever for our wee boy.
And this is where we need your help we need to raise funds for stem cell treatment, gene therapy and hopefully one day there will be a trial he is eligible for.
Alfie is soon to start constant medication to make his day a little easier..
He will eventually need specific aids to help him get through his day..
Please please please help us xxxx
Organizer
Colleen Pentony
Organizer
