| Location | Aylesbury, Buckinghamshire |
| Age | 9 months |
| Cause of Death | Genetic Condition |
| Date of Birth | 05/09/2007 |
| Date of Death | 16/06/2008 |
| Visitors | 6,896 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
to a very brave and special boy, i hope you have a lovely angel birthday tomorrow, i will be praying for you as always and for your mummy daddy and bailey too. sending you lots of love and floaty angel kisses on your 1st birthday. rest in peace special lil man free from pain and suffering. lots of love from julie dodwell. xxxxxxxxxxxxxxxxxxxxxxx xxxxxxxxxxxxxxxxxxxxxxxxx
To a very special angel
Just wanted to say hello and send you lots of floaty kisses and cuddles. I hope you are playing safe and watching over mummy daddy and Bailey. You are a special little boy who will continue to touch so many lives.
thank you for your message
Karen
Thank you for your message on Emily's site. I am so very sorry for the loss of Seth, he is a truly beautiful little boy. Emily and he would be the same age and I hope they have found each other up above and are playing together. Life is so cruel and my heart breaks every time I see another beautiful baby on this site.
I am here if you ever need to talk, just e-mail me.
Love Corinne xxx
An angel in the book of life,
wrote down my baby's birth,
and whispered as she closed the book,
Too Beautiful for earth. xx
Seth, such a brave boy, mummy talks about you and Bailey with so much love and Pride as all mummys should.
I feel honoured to have shared you life through your mummy, and was heartbroken to hear that your fight was over.
You can now play happily Seth with all the other Angels, free from any pain and the constraints of earth.
Look for my beautiful Rosie, she became an angel in Oct 2005 and she will look after you.
Karen, Ben and Bailey, you are in our thoughts every day, you know Im here if you want me Karen. xxxx
Angel baby
sorry for your loss such a wee darling,just lent to show us the way.at least**** baby seth****is in heaven with my two wee grandchildren wee Alan+Mark taken by the hands of evil.may they all be happy in heaven together.X*+X*+X*+
For a special angel.
My warmest wishes and prayers are forever with you karen and ben. Seth you are such a brave little boy who will hold a place in so many hearts for a long time to come, you play safe now. Huge hugs for your big brother too, you are both boys to be very very proud of and I know your mummy and daddy are. Always in my thoughts and prayers, emma xx
Seth
I hope you are enjoying your lovely balloons.We sent you the big blue bunch with the teddy attaced.They took off so fast.Play nice little man xxxx
Seth, you will forever be in my thoughts and prayers. What a brave little boy you where. Look down on your mummy and daddy and take care of them in their difficult times x
I am so very sorry for your loss. What a beautiful wee boy Seth was and what a large hole he must have left in your life. I like to think Seth and my son Joshua are now playing together, laughing away, perfect bodies now in a perfect ever after.
Thank you for the message you left for Joshua
xxx
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