| Location | Aylesbury, Buckinghamshire |
| Age | 9 months |
| Cause of Death | Genetic Condition |
| Date of Birth | 05/09/2007 |
| Date of Death | 16/06/2008 |
| Visitors | 6,895 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
HAVE A GOOD WEEKEND EVERYONE
Our Lives changed, the very moment you passed away.
We couldn't stop it; there was nothing we could say.
You've touched our lives so deeply to a point you will never know,
We try to think about you when we are feeling down and low.
Sometimes when our day gets hard we will think about your beautiful smile
And if we listen hard enough we will hear your voice after a while.
It's you who give us a reason to go on with our day,
And now if we want to see you we'll bow our heads and pray.
We catch ourselves looking for you still, in the halls and at the front door,
But when we call your name there is no reply any more!
We never thought a day would come where we would be apart,
God has you in his keepings, we have you in our hearts.
Life will go on, but never will be the same,
Your beautiful smile is gone, but it will always remain.
You're our angel from up above.
You'll always be missed, but most importantly... loved.
Just one more minute, God, is all we ask- why can't you give them back;
It seems like such a simple task. We guess people are right when they say God only takes the best,
We know enough now that you're peacefully at rest.
X X X X X X X X X X X X X X X X X X X X X X X X X X
You can shed tears that they are gone,
Or you can smile because they lived,
You can close your eyes and pray that they will come back,
Or you can open your eyes and see all that they have left.
Your heart can be empty because you can't see them
Or you can be full of the love that you shared,
You can turn your back on tomorrow and live yesterday,
Or you can be happy for tomorrow because of yesterday.
You can remember them and only that they are gone
Or you can cherish the memory and let it live on,
You can cry and close your mind be empty and turn your back,
Or you can do what they would want: smile, open your eyes, love and go on.
X X X X X X X X X X X X X X X X X X X X X X X X X X
I'm writing this from heaven, where I dwell with God above.
Where there's no more tears or sadness, there's just eternal love.
Please do not be unhappy because I am out of sight
Remember that I am with you every morning, noon and night.
And I will stay beside you, every day, week and year
And when you're sad I'll still be there to wipe away your tears.
When you think of my life on earth and all those living years
Because your only human their bound to bring you tears.
But do not be afraid to cry it does relieve the pain
Remember there wouldn't be flowers unless we first had rain.
I wish I could tell you of all that God has planned
But even if I were able to, you wouldn't understand.
When your going down the street and you've got me on your mind
I'm walking in your footsteps and only half a step behind.
And if you feel a gentle breeze or wind upon your face
Remember it's only me with a loving and soft embrace.
X X X X X X X X X X X X X X X X X X X X X X X X X X
Thoughts Today Memories Forever
Angela(Christopher-John Rowe)Mum
My Christmas Wish For You
My Christmas wish for you, my friend
Is not a simple one
For I wish you hope and joy and peace
Days filled with warmth and sun
I wish you love and friendship too
Throughout the coming year
Lots of laughter and happiness
To fill your world with cheer
May you count your blessings, one by one
And when totaled by the lot
May you find all you've been given
To be more than what you sought
May your journeys be short, your burdens light
May your spirit never grow old
May all your clouds have silver linings
And your rainbows pots of gold
I wish this all and so much more
May all your dreams come true
May you have a Merry Christmas friend
And a happy New Year, too ..
xxxxxxxxxxxxxx
Have A Good Weekend Everyone
You were a gift sent straight from Heaven.
Given to us from God above.
We didn't know how much you would teach us
About the meaning of true love...
For true love sometimes means letting go
Of someone precious and dear.
That is what we were forced to do...
Although we wanted to keep you here!!!
However, this is quite a selfish wish.
One we know we should ignore...
But, we truly do believe
That God must have needed you more...
Perhaps to be an Angel now,
Full of wisdom and love...
Watching over those of us who love you
From the shining stars above.
We miss you more than you can know.
You will never be replaced...
In our hearts and memories forever,
Will be your sweet and innocent sleeping face.
Each time we see your picture
You seem to smile and say,
“Don’t cry, I’m in God’s hands,
We’ll meet again someday!”
“The Best”
God saw you getting tired
And a cure was not to be.
So He put His arms around you
And He whispered “Come to Me”
With tearful eyes we watched you.
We watched you fade away.
Although we loved you dearly,
We could not make you stay.
A golden heart stopped beating,
Hard-working hands at rest.
God broke our hearts to prove to us,
He chose to take the best.
It’s lonesome here without you
We miss you more each day.
Life doesn’t seem the same
Since you have gone away.
When days are sad and lonely
And everything goes wrong,
We seem to hear you whisper
“Cheer Up and Carry On”
Thoughts Today Memories Forever
Angela(Christopher-John Rowe)Mum
Have A Good Weekend Everyone
God saw you getting tired
And a cure was not to be.
So he put his arms around you,
And whispered "Come to Me".
With tearful eyes we watched you,
We watched you fade away.
Although we loved you dearly,
We could not make you stay.
A golden heart stopped beating,
Ward working hands now rest.
God broke our hearts to prove to us
He only takes the BEST
If we could have a lifetime wish
And one dream that could come true
We would pray to God with all our
Hearts just to see and speak to you
A thousand words won’t bring you back
We know because we’ve tried
And neither will a million tears
We know because we’ve cried
You’ve left behind our broken hearts
And precious memories too
But we’ve never wanted memories
We only wanted you.
Little did we know that morning
God was going to call your name.
In life we loved you dearly,
In death we do the same.
It broke our hearts to lose you,
But you did not go alone.
For part of us went with you,
The day God called you home.
You left us peaceful memories,
Your love is still our guide.
And though we cannot see you,
You are always by our side.
Our family chain is broken
And nothing seems the same.
But as God calls us one by one,
The chain will link again.
Thoughts Today Memories Forever
Angela(Christopher-John Rowe)Mum
thinking of you
X♥X Please pass this on to remember our little ones X♥X
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Take a moment of your day
To maybe sit and in your mind
Think of all the precious babies
Yours, theirs and mine
Those whose short lives were over
Before they had really ever begun
Those precious little bundles
Who have made us all a Mum
Their tiny lives have touched us all
And what I want to say
They have brought us all together
Each and every day
The babies whose beautiful faces
In our minds forever will be
Whose names are etched within our hearts
For anyone, the whole world to see
The babies who touched our lives
Who we think of through our tears
I hope in time we will be able to smile
When we remember them through the years
So this week while we remember
All our babies who had to go
We shall show the world we are united
And how we love and miss them so X♥X
little soldier xxx
SWEET DREAMS
Sweet dreams are all I have of you, they're all you left behind,
Those cherished, lovely memories, never again to find.
On earth you were so wonderful, no child could I compare
To all the love you gave to me, you were so meek, so rare.
Sweet dreams they keep me going through the long and lonely night,
How I wish that I could hug you here and squeeze you oh so tight.
If I could walk to Heaven dear, to see you every day,
Just know I'd never want to leave, I know I'd long to stay.
We parted here on earth my child, but God's will shall be done,
Then dreams will be reality for once more we'll be one.
I love you for eternity, forever and some more,
Because you were the sweetest child, the kindest and most pure.
If Heaven's full of Angels, like you were here on earth,
I thank the Lord for lending you, for giving me your birth,
One day my child I'll see you there, so please look out for me,
You'll see my smile so wide before you see my spirit free.
God takes the sweetest Angels first, this we know is true,
For He came here and looked around, my darling, He chose you!
""With love ""
In the rising of the sun and in its going down,
We remember and love them.
In the beginning of the year and when it ends,
we remember and love them.
When we are lost and sick at heart,
we remember and love them.
So long as we live, they too shall live,
for they are part of us, and
we remember and love them.
Goodnight, Godbless sending love to you and your family love sent always Anna (Rhianna and Tegan Greens Mummy) xxxxxxx
love always paula ( thomas harrison) x x x x x x
When you feel a gentle breeze
caress you when you sigh
it's a hug sent from heaven
from a loved one way up high
If a soft and tender raindrop
lands upon your nose
they've added a small kiss
as fragile as a rose
If a song you hear fills you
with a feeling of sweet love
it's a hug sent from heaven
from someone special up above
If you awaken in the morning
to a bluebirds chirping song
its music sent from heaven
to cheer you all day long
If tiny little snowflakes
land upon your face
it's a hug sent from heaven
trimmed with angel lace
I am so sorry
What a beautifull little angel
my thoughts and prayers are with you
all my love Maggie XXX
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