| 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
miss you you munchie
Hello munch bunch, mummy and daddy miss you so much and think about you every day.
I miss our snuggles and your cheeky grin.
love you monkey.
daddy
xxxxxxxxxxx
beautiful angel Seth
Here is a teddy bear for you sweet angel as you can never have too many.
I hope you are playing happily with my daughter Livvy but try not to get up to too much mischief together.
send mummy and daddy lots of floaty kisses as i know thy miss you so much.
with love xxxxxxxxxxxxxxxxxxxx
OurForeverBabies.com
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_ LOVE__`-/___' a___a`___..-'______ __
_________|____, '(_)`.____|_ALWAYS_ _ __
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_/_, -._`_______)___(________ '_, -.__..
(_(___`._____, '_____`.______, '___)_)
_.._..____..__, '________`.____/___ /_/__
__`.`._, '_/_____________.._ _`._, ', '____
___`.__.-'_____ _________`-.___, '____
sweet dreams sweet heart
Mummy misses you so much sweet heart. We love you so much and are trying so hard to stay strong for you and Bailey. Love you baby boy. XXX
A special teddy for a very special little boy
_______/ .- , '_________`. -. ..______
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_________|____, '(_)`.____|____ _____
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__|_____, '|______________|` . _____|
___`.__, '_.-..____________/ -._`.__, '__
_________/_`._______ __, '__.._______
__.''-._, '______`._:, '_______`., -''.__
_/_, -._`_______)___(________ '_, -.__..
(_(___`._____, '_____`.______, '___)_)
_.._..____..__, '________`.____/___ /_/__
__`.`._, '_/_____________.._ _`._, ', '____
___`.__.-'_____ _________`-.___, '____
OUR ANGELS
✿*ﾟ:｡✿*｡✿ *ﾟ:｡✿*｡✿*ﾟ:｡✿*｡✿ *ﾟ:｡✿*
✿*ﾟ:｡✿*｡✿ *ﾟ:One Angel✿*ﾟ:｡✿*｡✿ *ﾟ:
｡✿*ﾟ:｡✿*｡✿ *ﾟ:｡✿*｡✿*ﾟ:｡✿*｡✿ *ﾟ:｡✿*
✿One angel, its wings spread out
✿colliding with the speed of sound,
✿One angel, that shone brighter
✿than the moon cratered by eternal night,
✿One angel, with beauty that made all the,
✿flowers shed there pedals our of jealously,
✿One angel, it's hands soft and warming
✿like the embrace of the suns warming ray's,
✿One angel, it's voice echo's through your mind
✿hitting every sense of safety into bloom,
✿One angel, with eyes that ate out
✿the vision of anything else but them in your sight,
✿One angel, it's touch like that of a dimming
✿candle penetrating your skin with warmth and delight,
✿One angel, that breathes everything
✿into you so you can stay alive,
✿One angel, that holds onto your soul
✿in the treasure box called her own,
✿One angel, is all you need
✿to have a eternal paradise in your soul,
✿One angel, you only see once in life,
✿One angel, thats yours to own,
✿One angel, made for me and you,
✿*ﾟ:｡✿*｡✿ *ﾟ:｡✿*｡✿*ﾟ:｡✿*｡✿ ✿*ﾟ:｡✿*｡✿ *ﾟ:｡✿*｡✿
Peace little one
Dearest Seth,
God has held a place for you in the spirit realm, here you will be free from illness, you will be filled with joy and happiness, and you will contiue to walk alongside your Mummy and Daddy. Be at peace now and know that you will always be in our hearts.
Blessings are with you special one!
ill send a little poem i sent to my grandson when he passed away in january god sent baby seth upon this earth to roam he saw there was no cure to be so i took your baby seth home free from sorrow free from pain free too roam round heaven always sleep well sweet sweet baby xxxxxxxx
seth
seth you are the brightest star in the night sky now sweet heart.
R.I.P baby seth
God saw you getting tired
And a cure was not to be
So He put His arms around you
And whispered 'Come with Me.'
With tearful eyes
We watched you go
And saw 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
He only takes the best.
It's lonesome here without you
We miss you more each day
Life doesn't seem the same
Since you've gone away.
When days are sad and lonely
And everything goes wrong
We seem to hear you whisper
'Cheer up and carry on.'
Each time we see your picture
You seem to smile and say
'Don't cry, I'm in God's keeping
We'll meet again someday
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