| Location | Aylesbury, Buckinghamshire |
| Age | 9 months |
| Cause of Death | Genetic Condition |
| Date of Birth | 05/09/2007 |
| Date of Death | 16/06/2008 |
| Visitors | 7,107 since 18/06/2008 |
| Creator |
On 5th September 2007 we brought home our beautiful baby boy Seth. After 4 mths of 'normal' family
life with him and his big brother Bailey we noticed Seth wasn't feeding properly and was being sick
all the time. After numerous hospital admissions Seth began having seizures and he became so poorly
that we ended up in intensive care.
A few days later we were told that Seth had a rare degenerative brain disorder and we would lose our
precious son. Over the next few months we spent our time in Oxford children's hospital whilst the
neurology team tried to find an official diagnosis.
Seth was tube fed as he had lost the ability to swallow and had no development. The most he could
do was lay on his back and smile at us. A few weeks down the line we even lost his beautiful
smile.
Eventually after every test possible Seth was diagnosed with ARX, a very rare genetic condition. So
rare that there are only a few other children with this condition. Seth is extra special though as
he is the first child in the world to have this specific form of ARX. No other child suffering from
this has degeneration of the brain.
We came home to enjoy our precious baby boy in the middle of May and were supported by a fantastic
team of community and hospice nurses and our family GP. Without there complete support we wouldn't
have been able to stay at home. During the last few weeks of Seth's life he needed infusion pumps
to keep his pain and discomfort at bay. He also had injections regularly. All this could only be
done by our amazing community team.
On 16th June 2008 at 6am Seth lost his fight. Our beautiful baby boy was sleeping with us when his
tiny body could take no more.
Seth was our second beautiful son. Bailey loved his brother and Seth responded to that with lots of
smiles and giggles. He loved his cuddles and would lay on his daddy's chest for hours. He fought
every day and would put up with whatever was thrown at him.
Sweet dreams baby boy. We only had you for 9 mths but every day was precious. You will live on in
mummy and daddy's hearts forever.
Good night Seth, sleep well.
Mummy, Daddy and Bailey. XXX
FOR A VERY SPECIAL ANGEL
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♥*•.♥*•.♥*•.♥*•.♥*•.♥*•.♥*•.♥*•.♥*•.♥*•.
JUST LETTIN....
...U KNOW..........
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.....oooO........... ...
.....(.....)......Oo oo....
...........(.......( …...)....
.........._).......) ..../.....
...................( __/.......
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......oooO.......... ....
.....(…...)…...O ooo...
...........(…….. (.....)....
.........__).......) …/.....
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... i.....was.....here xxx
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$$$$$$$$$$$$… * NIGHT… … … …$
$$$$$$$$$$$… * NIGHT… … … …$
$$$$$$$$$$… …* SETH … … …$
$$$$$$$$$$$… *SLEEP… … … $
$$$$$$$$$$$$… PEACEFULLY …$
$$$$$$$$$$$$$… … …ALWAYS… …$
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♥ .•**•.. ♥.Your Memory Will Embrace Our Hearts.♥.•**•.♥.
You had a big inpact on our life
And left a big hole when you died
Residing in Heaven above
With our dear Lord as your guide
♥ .•**•.. ♥ .•**•.. ♥ .•**•.. ♥ .•**•.. ♥ .•**•.. ♥
Your heavens beautiful angel
We know happy you must be
In the arms of the angels
All the beauty for you to see
♥ .•**•.. ♥ .•**•.. ♥ .•**•.. ♥ .•**•.. ♥ .•**•.. ♥
We wont be apart forever
Just you wait and see
One day we climb those heavenly stairs
And reunited forever we will be
Written by Jayne Roddy
♥ .•**•.. ♥ .•**•.. ♥ .•**•.. ♥ .•**•.. ♥ .•**•.. ♥
♥..◄███▓▒░░ SLEEP WELL ANGEL ░░▒▓███►..♥
The Four Candles
The four candles burned slowly
Their ambiance was so soft you
Could hear them speak.......
The first candle said “I am peace, but these days, no one wants to keep me lit.”
Then peace’s flame slowly diminishes and goes out completely.
The second candle said “I am Faith, but these days, I am no longer indispensable.”
Then Faith’s flame slowly diminishes and goes out completely.
Sadly the third candle spoke “I am Love and I haven’t the strength to stay lit any longer.” “People put me aside and don’t understand my importance. They even forget to love those who are nearest to them.”
And waiting no longer, Love goes out completely.
Suddenly........
A child enters the room and sees the three candles no longer burning.
The child begins to cry, “Why are you not burning? You are supposed to stay lit until the end.”
Then the fourth candle spoke gently to the little boy, “Don’t be afraid, for I am Hope, and while I still burn, we can re-light the other candles.”
With shining eyes the child took the candle of Hope and lit the other three candles.
Never let the Flame of Hope go out in your life.
Special Angel Day - by Sam & Gordon Winson
We do not need a special day
To bring you to our minds.
The days we do not think of you
Are very hard to find.
Each morning when we awake
We know that you are gone.
And no one knows the heartache
As we try to carry on.
Our hearts still ache with sadness
And secret tears still flow.
What it meant to lose you
No one will ever know.
Our thoughts are always with you,
Your place no one can fill.
In life we loved you dearly;
In death we love you still.
There will always be a heartache,
And often a silent tear.
But always a precious memory
Of the days when you were here.
If tears would make a staircase,
And heartaches make a lane,
We'd walk the path to heaven
And bring you home again.
We hold you close within our hearts;
And there you will remain,
To walk with us throughout our lives
Until we meet again.
Our family chain is broken now,
And nothing seems the same,
But as God calls us one by one,
The chain will link again.
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God’s Lent Child
“I’ll lend you for a little while
A child of mine” God said –
For you to love the while she lives
and mourn for when she’s dead.
It may be one or seven years
Or twenty two or three
But will you, till I call her back,
take care of her for me?
She’ll bring her charms to gladden you
and, should her stay be brief,
you’ll have her nicest memories
as solace for your grief.
I cannot promise she will stay,
since all from earth return
but, there are lessons taught below,
I want this child to learn.
I’ve looked the whole world over,
in my search for teachers true,
and from the throngs that crowd life’s lane
I have chosen you.
Now will you give her all your love,
nor think the labour vain,
nor hate me when I come to take
this lent child back again?
I fancied that I heard them say,
“Dear Lord Thy Will Be Done”
for all the joys thy child will bring
the risk of grief we’ll run.
We’ll shelter her with tenderness,
we’ll love her while we may,
and for the happiness we’ve known
forever grateful stay.
But, should thy Angels call for her
much sooner than we planned,
we’ll brave the grief that comes
and try to understand….
author unknown
love joanna xxxxxxxxx
To your Mummy and Daddy
There is nothing i can do,
to make him come back
There are no words I can say,
that can replace he words you long to hear
There are no answer's I can give,
that will satisfy your questions
There is not another soul I can introduce you to that will ever replace his
And, there is no love I can offer that will ever replace the love you shared
I can not promise your broken heart will ever be complete
I will not say it could have been worse
I will not deny it was a tragedy
I will not lie and tell you he will come back
He never really left
I do promise he hears you when you speak
I will say he loves you no matter the distance
I will not deny he is in a better place
And, I will not lie; he is waiting to greet you someday
He is every you step you take
He is in everything you do
He is the air you breathe
He is every beat of your heart
" He is like the wind. You can not see him...but you will always feel him"
To your Mummy ad
There is nothing i can do,
to make him come back
There are no words I can say,
that can replace he words you long to hear
There are no answer's I can give,
that will satisfy your questions
There is not another soul I can introduce you to that will ever replace his
And, there is no love I can offer that will ever replace the love you shared
I can not promise your broken heart will ever be complete
I will not say it could have been worse
I will not deny it was a tragedy
I will not lie and tell you he will come back
He never really left
I do promise he hears you when you speak
I will say he loves you no matter the distance
I will not deny he is in a better place
And, I will not lie; he is waiting to greet you someday
He is every you step you take
He is in everything you do
He is the air you breathe
He is every beat of your heart
" He is like the wind. You can not see him...but you will always feel him"
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