| Location | Luton Beds |
| Age | 2 years |
| Date of Birth | 21/12/2004 |
| Date of Death | 03/07/2007 |
| Visitors | 8,630 since 24/08/2007 |
| Creator |
Abbie Grace Brandon
Born at 10:55pm on 21st December 2004
Died at 8:54 pm on 3rd July 2007
Age 2 1/2 years old
LUTON
Abbie has left a great big hole in all who knew her lives. She has a big brother called Reece who is 6 1/2, and keeps understandably getting upset about his sister leaving us.
Abbie was born the first Granddaughter to our family and both myself and Matt thought that we now had our complete family. Time on the other hand was to let us know otherwise. Abbie was born with a very rare Genetic condition that both myself and Matt are carriers for, it is called COCKAYNE Syndrome. Seeing as we had an already healthy child we did not think that anything could go wrong or that we could pass something onto our baby. (CS 2) means that the children are sensitive to sunlight, premature aging, dwarfism, poor feeding, delayed development, microcephaly, visual and hearing impairment and Abbie also had seizures.
It is sadly a life limiting condition but nothing prepares you for when the time comes.
Abbie was an induced labour and all was going well, we went home the next day and what a christmas present we had, our lovely daughter. She was not feeding well and sleeping most of the time and were instructed by our midwife to take her straight to the hospital when Abbie was 8 days old and she was admitted straight away into the NICU. A lumber puncture was done and other various tests and Abbie did not cry at all apparently, and until any results came back we did not know as to what we were dealing with. As she was very dehydrated they gave her IV fluids and a couple of days later once she was rehydrated she was still not responding as she should have been. A basic brain scan was done at the time and it showed a few spots of concern and also absent red reflexes to her eyes. We were told that she would be brain damaged and blind. Well our whole world just fell apart. The next day it was discovered that Abbie had cataracts and both Matt and myself thought Oh great at least something could be done.
We saw a surgeon at GOS, who would perform the eye surgery and she thought that Abbie had this particular syndrome so when Abbie was under having her lensectomy they would take a skin biopsy and send to be cultured and tested. Abbie had a double lensectomy and because her eyes are so small and sunken that she had to wear contact lenses and not have an intruocular lens fitted.
Abbie started to develop seizures at 5 months old and had an NG Tube at 3 months old, which she then had a gastrostomy done at just under 1 year old. Developmentaly Abbie was tracking at about 3 - 5 months old. She couldn't sit unaided or crawl or talk and she was deaf in her right ear and very hard of hearing in her left ear which she wore a hearing aid for.
We have been regular visitors to our local hospital, if the nurses hear the name Abbie they usually expect a Brandon to follow. We were on first name basis in the end with most of the paediatric staff, but i would not have changed one thing about my daughter.
Abbie loved to be stroked, massaged and tickled kissed and generally loved. She loved her sensory lights in her room and the many fragrances that i put in her aroma diffuser and jossticks. Abbie liked alot of tactile toys from very soft to scratchy brillo pads, (they reminded her of daddy's whiskers). She also had a special chair to sit in at home to give the proper support and she had a standing frame which she would go in for short periods of time with her AFO splints on. Abbie had very tight ankles and i found that massage of her feet and ankles would help to bring some flexibility. Abbie needed 24 hour care as she was unable to do anything for herself and she had all her nutitional needs via the peg. But when you stroked her face and she smiled then the sleepless night that you had had because she had been very sick would soon be forgotten.
Abbie in her short life had a few illnesses, but mainly they were due to hypothermia, as she was unable to maintain her body temp (always dressed for the arctic weather). In Feb of this year Abbie had a major liver malfunction that we don't know what caused it but we thought that this might be it, it certainly woke us up to the fact that Abbie could go at anytime. Reece had had a very bad bought of chicken pox, and Abbie happened to catch it, it flaired up the streppacocle infection in her stoma site and this in turn led to septicemia, and then to top it all off she got phemonia. It was all to much for her little body to take and she had fought so hard in the past that i think it was just a fight to hard for her. One of the hardest things i have ever had to go through is giving the ok to the doctors to stop resusitation and have to let go.
We knew that Abbie would not live for long but we thought that at least a couple more years and i know that it still doesn't prepare you for the time when it comes. Abbie was taken to Keech Cottage childrens hospice, and Matt and myself were able to put her to bed and we went back in the morning. We stayed at the hospice till the sunday and returned on the wednesday, the day before her funeral on the 12th july.
The support we have received from them, words can not express the gratitude and love for them that we feel. We told Reece on the wednesday that his sister was an Angel, and he went in to see her on the Friday, he saw his sister in her casket on the saturday and touched her and then comented on how cold she was but he was ok with that. He was at the funeral with so many other people, that it is sometimes humbling to know that for someone so small she certainly touched many peoples hearts. Abbie did attend a special needs nursery and because the service was at 4 pm, they were all able to attend and i think that they all did.
Abbie was generally a very happy and content little girl, who just accepted what was thrown at her and rarely cried. she has taught me to be patient and that i can overcome anything that is thrown my way, through her courage and acceptance for things she has taught me this.
Abbie had a SENS worker who used to come and visit us every week to play with Abbie and to try to get her to do things through stimulation, she was also my care co-ordinater and became a very good friend. Her name is Mary, i was happy when Abbie started to go to nursery but also very saddened as i was to lose Mary coming round to see us as we had all gotten so fond of her. Mary spoke at Abbies service and she spoke how Abbie was one of the first to pilot a scheme in which various departments had to work in conjunction with each other as Abbie had various problems, and Abbie proved that this scheme does work.
My life is just one big void without Abbie to fill my day. Reece and me have to build up a new relationship as Abbies needs always came first. Our hearts will always ache for Abbie and my arm feels especially empty, but she will be forever in our hearts and i thank every day that i had Abbie and blessed that she came to us, as she was truely special and unique.
Play with the Angels, my little princess and remember that we LOVE YOU so much x x x x x x x x x x x x x x x x x x x x x x x
Merry Christmas Angel ♥
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-♩♪♫♬ Happy Birthday To You ♩♪♫♬
----- Happy Birthday To You
---Happy Birthday Dear Abbie
----- HAPPY BIRTHDAY TO YOU
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♫ ♫ Happy Birthday To You ♫ ♫
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-♩♪♫♬ HAPPY BIRTHDAY TO YOU ♩♪♫♬
♫♬ HAPPY BIRTHDAY TO YOU ♫♬
♫♬ HAPPY BIRTHDAY DEAR ABBIE ♫♬
♫♬ HAPPY BIRTHDAY TO YOU . ♫♬
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…………..…............... ..I.....LOVE FROM JUDE. X X
♥
In a baby castle, just beyond your eye,
Your baby plays with angel toys that money cannot buy.
Who are you to wish him back into this world of strife,
No, play on your baby, they'll have eternal life.
At night when all is silent and sleep forsakes your eyes,
You'll hear their tiny footsteps come running to your side
Their little hands caress you so tenderly and sweet,
You'll breathe a prayer and close your eyes and embrace them in your sleep.
Now you have a treasure that you rate above all others
You have known true glory,
You are still their mother.
A Special Child - by Edna Massionilla
A meeting was held quite far from earth,
Time again for another birth,
Said the Angels to the Lord above
This special child will need a lot of love.
Their progress may be very slow
Accomplishments they may not show
And they'll require special care
From the folks they'll meet way down there .
They may not run or laugh or play
Their thoughts my seem so far away
In many ways they won't adapt
And they'll be known as Handicapped.
So let’s be careful where they're sent
We want their life to be content,
Please Lord find the Parents who
Will do this special job for you.
They will not realise straight away,
The leading role they'll have to play
But with this child sent from up above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for this Gift from Heaven.
This precious child so meek and mild
Is Heaven’s Very Special Child XX
Copyright of Edna Massionilla
Precious Child by Karen Taylor Good
In my dreams, you are alive and well
Precious child, precious child
In my mind, I see you clear as a bell
Precious child, precious child
In my soul, there is a hole
That can never be filled
But in my heart, there is hope
'Cause you are with me still
In my heart, you live on
Always there never gone
Precious child, you left too soon
Tho' it may be true that we're apart
You will live forever... in my heart
In my plans, I was the first to leave
Precious child, precious child
But in this world, I was left here to grieve
Precious child, my precious child
In my soul, there is a hole
That can never be filled
But in my heart there is hope
And you are with me still
In my heart you live on
Always there, never gone
Precious child, you left too soon,
Tho' it may be true that we're apart
You will live forever... in my heart
God knows I want to hold you,
See you, touch you
And maybe there's a heaven
And someday I will again
Please know you are not forgotten until then
In my heart you live on
Always there never gone
Precious child, you left too soon
Tho' it may be true that we're apart
You will live forever... in my heart
Happy Birthday In Heaven - by Winnie Lovett
"Happy Birthday Abbie"
It's sure to be the best one yet,
Though you left us here behind.
Did you think that we'd forget?
Your cake this year, will surely be,
A beauty to behold.
With the icing made of Silver,
And the candles made of Gold.
Yes, your birthday in Heaven,
Will be such a grand affair.
And I know you'll look so lovely,
With a halo in your hair.
The Angels will come from everywhere,
To sing your birthday song.
And I know they'll be so happy,
That you've joined, God's Happy Throng.
No I can't send a card this year,
Or give a gift so fine.
So I'll just send a special prayer,
To that wonderful Daughter of yours.
Special Child - by Unknown Author
A handicapped child has a special life,
But a lot of hard work and plenty of strife.
They may not walk or talk or play,
In their own world they’re locked away.
These children are sent from Heaven above,
They are Angels on earth for us to love.
Their time on Earth may only be short,
But there are lessons from them we must be taught.
Don't turn your back or walk away,
'Look at that poor child' I hear you say.
They’re not poor I want to yell,
They’re rich in love and doing well.
This poem of mine comes from my heart,
Abbie has died, I'm torn apart.
But her smiling face I will always picture,
A precious child, who made life so much richer.
XX
Little Sister - by Christie Wildman
For Brandon XX
You have this little Sister,
She loves you very much,
But you’ll never get to see her,
Or feel her gentle touch.
She had to go away you see,
Through God’s garden gates.
Though she longs to meet you,
Heaven’s where she waits.
You have this little Sister,
She’s sending you her love,
Although she longs to be with you,
She watches from above.
She grew her Angel wings you see,
Though none of us were ready,
On one of heavens clouds she sleeps,
Cuddling her teddy.
You have this little Sister,
She’d love to come and play.
But for all eternity,
In the sky is where she’ll stay.
God had a plan you see,
He needs her by his side,
He’s shown her how to use her wings,
Through heavens clouds she glides.
You have this little Sister,
And though you are apart,
The love that you feel for her,
Will remain ever in your heart.
What kind of place would heaven be with all its streets of gold, if all the souls, that dwell up there like yours and mine, were old? How strange would heaven’s music sound when harps begin to ring, if children were not gathered ‘round to help the angels sing. The children that God sends to us are only just a loan, He knows we need their sunshine to make the house a home. We need the inspiration of a baby’s blessed smile. He doesn’t say they’ve come to stay, just lends them for a while. Sometimes it takes them years to do the work for which they come. Sometimes in just a month or two our Father calls them home. I like to think some souls up there bear not one sinful scar. I love to think of heaven as a place where children are.
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