| Location | Surrey |
| Age | 1 year, 2 months |
| Cause of Death | Genetic Condition |
| Date of Birth | 26/07/1999 |
| Date of Death | 21/10/2000 |
| Visitors | 17,624 since 05/02/2009 |
| Creator | |
| Helpers |
When Alex was born we were over the moon and felt like we had won the lottery, having lost his sister Ciara the year before (stillborn at 40 weeks). This is his abbreviated story.
At 5 months old Alex stopped breathing whilst out in the car with me. He was rushed to our local hospital, transferred to Guy's, and then to Ormond Street where he was stabilised. Alex spent 9 days in PICU where they ran various tests on him. He was gradually weaned off morphine and he was transferred to the Peter Pan respiratory ward. After the high tech PICU, this ward looked ancient, but the level of care for both Alex,and us as his parents was wonderful. The nurses were fantastic. The Drs. told us that although Alex had survived this time, that without a tracheotomy, they couldn't be sure it wouldn't happen again. They also wired him up to a computer overnight which showed that his breathing rate slowed down dramatically, a couple of times a night,and although he self corrected, without a trachy he might stop breathing while asleep. Thinking back to his sister, we couldn't take any chances,and Brian and I had to get our heads round a tracheotomy and the level of care required.
While we were at GOSH the Genetics Team came to look at Alex. Apparently they do this to every child that comes in, so I was relatively unconcerned when they asked if they could take some blood to run tests. A week later we were told thay wanted to see us. We were shown into a room with 4 doctors, a genetic's nurse, 2 of Alex's nurses and a Genetics Professor, who proceeded to tell us in medical jargon,that Alex had an extremely rare version of Trisomy18 (Edwards Syndrome)a genetic condition. They only knew of 6 other children in the world who had the same version as Alex. Of the 6 children, 5 died between 6-8 months,and only one lived until he was 13 months. He said Alex would have a very poor quality of life and he would never walk or talk and he was completely negative about his chances.They only thing they were certain about,was that he was going to die. In fact the implication was - the sooner the better! As you can imagine, we were absolutely gobsmacked. We thought we had been through the worst when Alex had stopped breathing.
After this devastating news we decided not to put Alex through the trauma of having a tracheotomy and made plans to be transferred back to our local hospital, where we were going to be trained in resuscitation,and to prepare ourselves for taking Alex home. We went on to have another 10 wonderful months with him, which we will always treasure.
Alex had a wonderful short life and brought joy to all who knew him. We went swimming with a special needs swimming group and he was always happiest in the water,where he used to sing to himself. He also learned to roll over and laugh and was almost able to sit up unaided. He progressed onto solids at 8 months, when he decided he had enough of his naso-gastric tube, and he pulled it out. As he was feeding so well, it never went back in. As parents of these special children, you know what it's like, they progress at their own rate and have their own little milestones. I wish that Professor at Ormond St. could have seen how well he did!
We flew home to Ireland, every other month, where Alex got to play with his cousins who adored him. He celebrated his first birthday in our family summer house, which was lovely, as we hung balloons from his sisters tree. We had a fabulous summer with him and all the professionals were really pleased with his progress.
One night in October, Alex's apnoea alarm went off for the first time ever. Brian did mouth to mouth on him, and heart massage,while I phoned for an ambulance. But looking at Alex, I knew this time was different. He was white as a sheet, and I knew he was gone.The paramedic continued heart massage all the way to the hospital.When we arrived Alex was whisked away to A&E and we were shown into a waiting room. I was convinced Alex had died, and we phoned our families to tell them. Then they told us they had intubated him,and he was on a ventilator. We had originally agreed with his consultant, that if his heart stopped, we didn't want him revived, but they didn't have his file in the emergency room. We told them we didn't want him kept alive on a machine, so they said they'd remove the tube and he would either slip away, or would breath on his own. We decided Alex could make his own decision,if he wanted to go.So they removed the tube and Alex continued to breath on his own. We were moved into a private room on the children's ward to allow us some time with Alex on our own, but he never re-gained conciousness. He opened his eyes a few times, but I don't think he could see us.With hindsight I'm glad they revived him,as it gave us time to say our goodbyes. It also gave my Mum time to fly over from Ireland to say goodbye and this was really important to her and to Brians Mum.
Alex slipped away peacefully the following morning. Our little soldier had had enough. Although we knew for 10 months we were going to lose him, it's still a massive shock when it happens, and we were left totally devastated! There was a huge void in our lives without him. We approached the nurses and asked if Alex could donate any of his organs, and we were pleased to discover that he could donate his heart valves and his corneas. We took some comfort that he might be able to help some children live a better life, and at least a part of him could live on.
Fortunately we took loads of photo's of Alex,as well as video footage of him and us together and we get great comfort from watching them. It's great to be able to see him, and to hear him babbling away to himself. At least we had 15 months of pure happiness, but we still miss him every day.
A couple of years later we adopted our two wonderful daughters who are now aged 7&8, who fill our every waking moment and are a joy to us. They know all about their other sister and brother and love hearing stories about them.
Sorry for going on so long. Not many people want to hear our story, but sadly, you have lost loved ones too,and you know what it's like.
Thanks for listening.
♥~☼~♥~☼~♥~☼~♥
THINKING OF YOU
♥~☼~♥~☼~♥~☼~♥
There is a home that lies beyond
and past its golden door
awaits the one who's now away
not lost-just gone before
and in the home that lies beyond
the Master will prepare
a place for you, and when He calls
you'll meet your loved one there
♥~☼~♥~☼~♥~☼~♥~☼~♥~☼~♥
if I listen really close
in the silence of the night
i hear your voice to comfort me
and say that you're alright
but it's often hard to understand
why certain things must be
and the reasons why they happen
are so often hard to see
but I find comfort in the knowledge
that God is always there
to keep the one I loved so much
forever in His care
♥~☼~♥~☼~♥~☼~♥~☼~♥~☼~♥
Love always Edwina & Colin xx
Sunday 29th January 2012.
Lot's Of Sunday Love To You........
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.(________.....___)...
When we lose someone
but dont know why?
We cant understand
no matter how we try,
It just Leaves us sad,
with so much hurt and pain
and very often
drives us insane
By Lisa Heritage
♥ Love Always elaine & Baby Ryan xo
~~~~~TO A PRECIOUS ANGEL~~~~~
╔═════════ೋღ♥ღೋ═════════╗
ೋღ♥ღೋ♥ Angel of the Heart ♥ೋღ♥ღೋ
When you hear an Angel softly whisper to you,
In the light of the day,or the darkness of the night,
When you feel the presence of an Angel caress you,
And see their beautiful wings spread in graceful flight.
═ೋღ♥ღೋ══
When something inside you makes you smile,
Or you feel a warmth suddenly wash over your heart,
When your dreams are beautiful and include an Angel,
As you lay with your pillow,in the dark.
═ೋღ♥ღೋ══
When you're alone and everything is quiet around you,
Yet you can hear the sweetest lullaby being sung,
When waking up in the morning,and troubles feel lighter,
From speaking with an Angel,before a new day has begun.
═ೋღ♥ღೋ══
Then you know I am the Angel who you can feel and hear,
Your special Angel from Heaven who will always be so near,
I am no longer able to be here in body,but I'm with you every day,
As my loving heart, my soul,and my Spirit, will never be far away.
Written by Pamela Hall.
╚══════════ೋღ♥ღೋ════════╝
~xx~with love always Gael.~xx~
Saturday 28th January 2012.
......../).....***...../)
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....(.....0...........0.....)
.......====O ====
(_I_I_)....****.......(_|_|_)
(_***_)
(_***_)----------- A Little Tribute, Small and Tender,
(_***_)----------- To Let You Know I'll Alway's Remember
(_***_)_..........
(_***_)_........
(_***_)_……...(
(_***_)_…...]
(_***_)_….... /
Saturday Night.
____ ,+.*`,+.*`,+.
________$_,+.*`,+.*`,+.
_______$$$+.*`,+.*`,+.
______$$$$$+.*`, +.*`,+............ Night Night,
$$$$$$$$$$$$$$$$$+.*`,+.*`,+... Our Memories Will Last
____$$$$$$$$$$$+.*`,+.*`,+....... Forever,
_____$$$$$$ $_,+.*`,+.*`,+........ Sweet Dreams
____$$$$_$$$$__,+.*`,+.*`,+.
___$$$_____$$$__ ,+.*`,+.*`,+.
__,+.*`,+.*`,+.__,+.*`,+.*`,+.
_____ ,+.*`,+.*`,+
♥ Love Always elaine & Baby Ryan xo
♥
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♥
THE BROKEN HEART FEELS PAIN
I have always thought that a Broken heart
Was just a figure of speech
That the heart doesn’t truly break,
It’s just the words we speak.
And then my loved one went away,
Up to the Heaven’s to stay
I found that heartbreak was no lie,
My heart truly felt the pain!
(c)2011 vickihansen.wordpress.com/
♥ ~ ♥ ~ ♥ ~ ♥ ~ ♥ ~ ♥ ~ ♥ ~ ♥ ~ ♥ ~ ♥
~♥ With Love ♥~
╔═════════ೋღ♥ღೋ═════════╗
Think of me
When you walk out into the cold wind of winter
When you see a leaf fall to the ground
Think of me
═ೋღ♥ღೋ══
When you raise your face to the sunshine
When you notice spring flowers all around
Think of me
═ೋღ♥ღೋ══
For I will always be there with you
I’ll know of your sorrows and pain
═ೋღ♥ღೋ══
Think of me as your guardian angel
Through days of dark clouds and rain
═ೋღ♥ღೋ══
Think of me in all that you do
For I’ll always be there to carry you through
═ೋღ♥ღೋ══
Think of me
I am always there.
Linda Treinen.
╚══════════ೋღ♥ღೋ════════╝
~xx~with love always Gael.~xx~
♥ Angel Listen please ♥
─▄▄─▄▄──
██♥██♥██
.▀██o██▀
.──▀█▀──
♥When I want to talk to you
It's usually when i am alone
I whisper words quietly at first
and then I'll change my tone.
For I want to speak out Loudly
For you my Angel to hear
how much your loved and missed by us
Every day of the year ♥
─▄▄─▄▄──
██♥██♥██
.▀██o██▀
.──▀█▀──
♥ Lisa Heritage ♥
~~~~~TO A PRECIOUS ANGEL~~~~~
❤
~~~ ԼƠƔЄ ԼƖƔЄƧ ƠƝ ƑƠƦЄƔЄƦ ~~~
________ _♥ _♥ _♥____
_____♥-___()_ ()_ ()____♥
____♥.____█_ █_ █____♥
ƖƝ ЄƛƇӇ MЄMƠƦƳ ƛƝƊ ƬӇƠƲƓӇƬ
ƠƑ ƳƠƲ ƜӇƠ MЄƛƝƬ SƠ ƔЄƦƳ MƲƇӇ
ƛƝƊ ƬӇЄ ӇƛƤƤƖƝЄSS ƳƠƲ ƁƦƠƲƓӇƬ.
________ _♥ _♥ _♥____
_____♥-___()_ ()_ ()____♥
____♥.____█_ █_ █____♥
ԼƠƔЄ ԼƖƔЄS ƠƝ ƑƠƦЄƔЄƦ
ƖƬ ƜƖԼԼ ƝЄƔЄƦ ƑƛƊЄ ƛƜƛƳ,
ƑƠƦ ƖƝ MƳ ӇЄƛƦƬ
ƳƠƲ ƛƦЄ ƜƖƬӇ MЄ.
ЄƔЄƦƳ MƠMЄƝƬ ƠƑ ƬӇЄ ƊƛƳ
________ _♥ _♥ _♥____
_____♥-___()_ ()_ ()____♥
____♥.____█_ █_ █____♥
~~~ ƲƝƘƝƠƜƝ ~~~
❤
~xx~with love always Gael.~xx~
25/1/2012.
ƓƠƠƊƝƖƓӇƬ SƜЄЄƬƊƦЄƛMS
___________$__________
__________$$$____________★
_________$$$$$________
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★ Night Time ★
A Shooting star
Fly's through the sky,
The Moon is Beaming,
Way up High.
The Darkness
Falls all around,
The Night Sky
appears without a sound
The stars begin Twinkling
out some Light,
and our Angels are
Keeping us in there Sight
By Lisa Heritage
✗... ԼƠƔЄ ♥ ƛԼƜƛƳS ...✗.... elaine & Baby Ryan xo
~~~~~TO A PRECIOUS ANGEL~~~~~
The flutter of your wings
~♥x♥~* ~♥x♥~* ~♥x♥~* ~♥x♥~* ~♥x♥~ *~♥x♥~
Sometimes when I'm very quiet
I can hear "The Flutter Of Your Wings"
The sound is like music to my ears
and it makes my heart sing
*~♥x♥~
When loneliness and emptiness
bring not a sound to hear
You know exactly what I need
as you flutter past my ear
*~♥x♥~
Sometimes when I'm very still
I can almost feel "The Flutter Of Your Wings"
Their feathery touch is like magic
and much peace and comfort it brings
*~♥x♥~
When I am left with no one
to hug or hold on to
You gently wrap me in your wings
and your love I feel is true
*~♥x♥~
Sometimes when I am all alone
and against the distant sky
I can almost see "The Flutter Of Your Wings"
It brings a tear of happiness to my eye
*~♥x♥~
When I look around and find not a soul
who cares if I live or die
You flutter your wings up in the clouds
and I find comfort in the sky
*~♥x♥~
You are my Guardian Angel
and when I hear, feel and see
This means you are close by my side
and are watching over me
*~♥x♥~
Sometimes when I feel so alone
you remind me that I'm loved
My angel sent down from heaven
with much love from up above
*~♥x♥~
The love and closeness I sense from you
is all the reassurance I need
That I am someone very special
and I will follow where you lead
~♥x♥~* ~♥x♥~* ~♥x♥~* ~♥x♥~* ~♥x♥~ *~♥x♥~
Copyright � March 2001 Island Princess
~xx~with love always Gael.~xx~
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