Paul (Pauly) Graham Ackroyd

Pauly was born on 6th Febuary 2005 at 6:39am weighing 3lb 3oz.
Pauly fell asleep on 27th December 2007,at 10:30am amongst his loving family.

When I think of Pauly and who he was, I only think of joy. Cheekyness,boisterous, naughty, loveable
and a fighter. A little boy with a big miracle and although it pains me to say I think T.S. was part
of that miracle. He had a way of making even the most miserable of times happy and bearable. The way
he never forgot anyone, even the woman who stacks the shelfs at Asda. The way he nipped and kicked
his big and little sister, and the way he asked if I was alright and where his sisters were, when
he'd just woke up in intensive care.Most of all Pauly had a wicked laugh and I've never heard a room
fill with such joy since we lost our boy.When I think of Pauly only reaching 2yrs 10mths, I do feel
sad but I do try to remember that it was better than a day.

ITS BETTER TO HAVE LOVED AND LOST THAN TO HAVE NEVER LOVED AT ALL!

Thank-you Pauly for fighting so long.
pauls story follows this in tributes Title; The Timothy in Pauly.
IF ANY ONE WOULD LIKE TO LEAVE A CANDEL OR PIC PLEASE FEEL FREE
WE WOULD BE SO GREATFULL.
THANK-YOU SO MUCH TO ALL WHO LIGHT CANDELS FOR PAULY THEY MEAN THE WORLD TO US.XXX
This is your story darling in mummys words.(well a much shorter version anyway).

When I was 27 weeks pregnant with you the doctors discovered you had a poorly heart. 2;1 av heart
block. So your heart was beating too slow.
The docs said when you was born you would need to have a pacemaker, that would help your heart
function better.
When you was born at just 30 weeks gestation weighing 3lb 3oz, the real fight began.
Due to you been early you was very poorly and you needed special equipment to keep you alive.
A few hours after you was born it became obvious that there was other stuff wrong with you.
You had syndactly (joined) fingers and toes, and a serious heart condition called long QT syndrome.
This meant you was at continuess risk of cardiac arrest.
The 2 symptoms of LQTs and syndactly got the docs thinking you cud have something else.
So your blood, mine and your dads was sent to America and you was very sadly diagnosed with. TIMOTHY
SYNDROME.
A rare and deadly syndrome that had only affected 18 children worldwide.
Sadly the life expectency for T.S. kids is very poor. Most of them have sadly died in there first
year of life.
Timothy syndrome means a whole wide range of things that you cud suffer.
Back then the docs weren't hopeful, not only was you fighting prematurely but you also had a life
threatning disorder.
But your Pauly and as we cum to realise you like to prove everyone wrong, and so we thought, along
with half the estate praying for you.Even people we didnt know.
Slowly you became stronger and got bigger.
The docs said that because of the massive risk of cardiac arrest that you should go home with a
de-fib(a shocking machine) that would hopefully restart you heart.
This was tough me and your daddy had to train in life support advanced,the truth is most docs dont
even need de-fib training.
But we loved you and wanted you home.
When you finally did cum home 4 and a half mths later,you had a de-fib,E.C.G. machine,oxygen and a
feeding tube.
Hard work you, it was like ward 69 at our house, with doctor mummy and daddy.
Over the nxt two years we got you strong you had your hand op that went well.
Everyday we just prayed you would live another.
You was in and out of hospital alot with you chest and other stuff.
You became a little boy, and I think we all took for granted that you were strong.
When you reached 2yrs it was like Timothy had woke up.
The doctors did a recording of you heart and found that for 6 seconds your heart was in a life
threatening rhythm.
It was decided that on 15th june, you needed to be fitted with a pacemaker so they cud increase your
medicine.
During that op you heart became sensitive and you needed shocking more than 10 times.
But again you fought back.
The nxt day you was carrying on saying 'playroom now', 'ECG off now'!
Then the nxt day you started having fits, linked with T.S.
you had a couple then came the hypos(hypoglicimea).
They were really scary as you dropped you sugar levals fast and dangrously low.
Yet again you bounced back, and after 7 weeks we took you home again.
You loved the ward and the staff and I always said you wuld be back soon and you always were.
Hannah house were you went for respite taught us alot. Mostly that you wouldnt break at the
slightest knock.
Thats where you were when it all began on x-mas eve.
Your nurse rung us to say you had needed your de-fib and it had shocked you.
Panic thats all i can remember.
When you arrived at hospital you were fitting and it was so scary.
They finally sedated you and put you on the breathing machine.
They took you to intensive care.
You was stable overnite and on x-mas day you woke up.
The first thing you asked me was where Decie and Lana was(your big and little sisters.)Then because
I was crying with happiness that you was awake you asked if I was alright.
Which made me cry more, you had just been threw all that and you was still asking about other
people.
The nxt day (boxing day) me and Daddy brought you sum of your small presents. and you was took up to
the ward.Uncle Lee brought your Leeds kit, which you loved.
Then uncle Darren and uncle Wayne came, with auntie Della and antie Kelly,they played with you and
feed you beans and sausages.
You loved your pressies mostly the simpsons ones.
We watched sum episodes with you and you fell asleep.
Daddy stayed with you like he always did.Yours and his time at bed.
The nxt morning we rung up to ward to see how you were.You was sleeping so we nipped home to collect
the rest of your presents.
By the time i got home the phone was ringing.
They asked us to cum back as you had got really poorly.
Thats when you left us.27th december, the first non xmas day.
The docs said that your heart had gone into cardiac arrest and had starved you of oxygen.
So we let them stop trying, and I must admit thats the hardest thing we ever had to do for you.
The rest is a blur.
Carrying on without you is only just bearable, I have to for your sisters and daddy.
Yet I do know theres so much to be greatful for.
The fact that you lived as long. Had you of gone when you were neo-natal we wuld not of shared your
first word,steps and laugh.
The fact you got to teach lana well shes a little git.
The holiday to Cleethorpes, where you slept in a big boys bed for the first time, and touched the
sand.
The thing I wished more than anything I've ever wished for,was to hear you one last time,saying
mummy.
And you did, you woke up for a last christmas, you opened sum presents and you told me and daddy
'love you' one last time.
I'm so thankful of you Pauly, you have brightened my life and I'm so proud to say I'm your MUM.
You will never be forgotten and I will continue to tell your courageous story.
THANK-YOU DARLING.!
Miss you millions love you
more.xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx!