| Location | Aylesbury, Buckinghamshire |
| Age | 9 months |
| Cause of Death | Genetic Condition |
| Date of Birth | 05/09/2007 |
| Date of Death | 16/06/2008 |
| Visitors | 6,893 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
Angel Seth
Beautiful baby angel Seth, now playing with the other angels in God's garden. Rest in peace little one. My thoughts and prayers are with your mum, dad & Bailey, watch over them...
Just a poem for you .......
R.I.P Sweet Angel xxx
When God calls little children
to dwell with him above,
We mortals sometime question
the wisdom of his love
For no heartache compares with
the death of one small child
Who does so much to make our world,
seem wonderful and mild
Perhaps God tires of calling
the aged to his fold,
So He picks a rosebud,
before he can grow old.
God knows how much we need them,
and so he takes but a few
To make the land of Heaven
more beautiful to view.
Believing this is difficult still
somehow we must try,
The saddest word mankind knows will always be 'Goodbye.'
So when a little child departs
we who are left behind
Must realize God loves children,
Angels are hard to find.
xxx xxx xxx xxx xxx
my heart is with you
after reading your tribute to your sweet little boy seth it made me cry i understand your loss and feel the pain you r going through right now, i lost my daughter from cancer in 2002 she was 5.5 years old, her name was jade, i will never forget her , i have all photos and great fond memories i will cherrish for ever, your young seth will now be in gods gardens and my jade will help look after him they will be come great friends, sending you and your family all my love contact me anytime ok im always here if you need to talk ,take care and all my love sarah xx
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