| Location | Aylesbury, Buckinghamshire |
| Age | 9 months |
| Cause of Death | Genetic Condition |
| Date of Birth | 05/09/2007 |
| Date of Death | 16/06/2008 |
| Visitors | 6,894 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
angels in heaven
all our angels together and safe protecting each other by heavens gate,being strong and happy and having fun and for one more time god bless you little ones from another broken harted mum x x x x x
god bless little man
I would not like for you to cry
It's just a part of life to die
I know you miss me and you're sad
But dying isn't something bad.
I'm only just beyond your sight
I've gone with Angels to the light
I send to all of you my love
From Heaven's gardens up above.
I like it here, I'm having fun
And I am with The Holy One
I am sitting on His knee
With Jesus watching over me.
So many souls I knew before
Were waiting here at Heaven's Door
To welcome me with open arms
And keep me safe and make me warm.
So when you think of me please smile
For I will see you in a while
Trust the Lord, don't ask Him why
He wants me here to paint the sky
With rainbows, clouds and shining lights
To brighten days and warm your nights
Remember what I said before
Please don't cry for me any more.
I am Heaven's Child, you see
I play with Angels surrounding me
I can fly with the speed of thought
To be with you when you think I'm not
So please remember I love you
And I know you love me too
And even now, while we're apart
I'm still right here ... I'm in your heart.
i understand fully how you must be feeling
i have just finished reading your lovely tribute to your special angel seth, i too lost my little boy he fell asleep on the 29th feb 2008, he was a fighter and suffered so much, he was 20 months and out of that only spent 5 weeks at home, the rest was spent in nearly every hospital in london he had had 17 op's in his short little life, i feel for you as too see your child in pain and unable to do anything for them, bobby also in the final 5 months had to have subcut morphine midazalon, methadone ketamine, basically every drug going, and he still had some breakthrough pain, i wont lie to you your going to go through every emotion, anger guilt sad, but you just have to tell yourself you did everything possible for your son, im here if you need to talk, my deepest sympathy goes out to you and your family xxx
There is a little corner
Where I visit everyday
No-one knows I go there
Or how long that I stay
In this little corner
I speak to you alone
I imagine what it would be like
To have you back at home
In this little corner
I hold you really tight
I cuddle, kiss and squeeze you
What a pretty sight
In this little corner
I tuck you up to sleep
Another cuddle another weep
Where is this little corner
Where we never are apart
It's where I always have you with me
It's the corner of my heart
Beautiful Seth
S - Seth, so special, such a fighter, so strong.
E - Etched in our memories, so sad he has gone
T - Time ran out too soon, a passing so wrong
H - Hero in our hearts, his light will shine on.
Karen, Ben and Bailey, words can never express the depth of my sadness for you, Seth was such a special baby and will always be remembered by the pdis mums. What you have written is beautiful. My thoughts as always are with you. From Lisa (lisajni bounty) xx
What a strong little man to fight for so long, he obviously wanted to spend more time with his mummy, daddy and big brother.
To mummy, I lost my baby after just 5 hours of life. Although at the time I thought I would never get through it, it does get a little easier after time and talking really helps so if you ever need a chat just log on to this site, it really does help to talk with mummys of other angels.
Love to all the family, my heart goes out to you all.
Sweet dreams Seth, have fun playing in the clouds with Kaydenxxxxxxxxxx
Stop all the clocks, cut off the telephone,
Prevent the dog from barking with a juicy bone,
Silence the pianos and with muffled drum
Bring out the coffin, let the mourners come.
Let aeroplanes circle moaning overhead
Scribbling on the sky the message He Is Dead,
Put crepe bows round the white necks of the public doves,
Let the traffic policemen wear black cotton gloves.
He was my North, my South, my East and West,
My working week and my Sunday rest,
My noon, my midnight, my talk, my song;
I thought that love would last for ever: I was wrong.
The stars are not wanted now: put out every one;
Pack up the moon and dismantle the sun;
Pour away the ocean and sweep up the wood.
For nothing now can ever come to any good.
Karen, Ben and Bailey, I can never pretend to understand the grief you are going through at this sad time. I just want you to know I am here to lend an ear if you need it. I wish I could take some of your pain away. Much love, forever and always.
Laura and family.xxxxxx
god bless you
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