| Location | Luton Beds |
| Age | 2 years |
| Date of Birth | 21/12/2004 |
| Date of Death | 03/07/2007 |
| Visitors | 6,987 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
beautiful little princess
SWEET DREAMS
Sweet dreams are all I have of you, they're all you left behind,
Those cherished, lovely memories, never again to find.
On earth you were so wonderful, no child could I compare
To all the love you gave to me, you were so meek, so rare.
Sweet dreams they keep me going through the long and lonely night,
How I wish that I could hug you here and squeeze you oh so tight.
If I could walk to Heaven dear, to see you every day,
Just know I'd never want to leave, I know I'd long to stay.
We parted here on earth my child, but God's will shall be done,
Then dreams will be reality for once more we'll be one.
I love you for eternity, forever and some more,
Because you were the sweetest child, the kindest and most pure.
If Heaven's full of Angels, like you were here on earth,
I thank the Lord for lending you, for giving me your birth,
One day my child I'll see you there, so please look out for me,
You'll see my smile so wide before you see my spirit free.
God takes the sweetest Angels first, this we know is true,
For He came here and looked around, my darling, He chose you!
•:*:• •:*:• •:*:• •:*:••:*:••:*:••: *:• •:*:• •:*:• •:*:••:*:••:*:
•:*:• •:*:• •:*:• •:*:••:*:••:*:••: *:• •:*:• •:*:• •:*:•
…………..CANDLE OF LOVE
•:*:• •:*:• •:*:• •:*:••:*:••:*:••: *:• •:*:• •:*:• •:*:•
Few people come into our lives
and make everything shine,
but you're one of those
rare and splendid jewels
who makes the whole world bright.
When I am sad, you make me smile.
When I am alone and blue,
you are there for me,
and you make me feel strong enough
to accomplish anything.
Because I appreciate
the many things you do,
more than words can say,
I'm sending you the Candle of Love,
and hoping you receive
many blessings from above.
•:*:• •:*:• •:*:• •:*:••:*:••:*:••: *:• •:*:• •:*:• •:*:•
Please send the candle of love to someone
who has touched your life, and keep the flame
of love burning bright.
•:*:• •:*:• •:*:• •:*:••:*:••:*:••: *:• •:*:• •:*:• •:*:•
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---------OOOOOO----- ---CANDLE
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---------OOOOOO----- --OF
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---------OOOOOO----- ---LOVE
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¸.•´¸.•´¨) ¸.•*¨)
(¸.•´ (¸.•´ .•´ ¸¸.•¨¯`♥ ♥
love sent to you for all your support.
Love Joan xXx
I just want to apologise for all my missed candles as I have been having lots of problems with my internet I have just received a new router but still having problems with that so if I miss candles its because I have not managed to get a connection but I want to thank-you for your continued support on my angels site it means so much THANK-YOU from the bottom of my heart xxxx
XxX FOR A VERY SPECIAL FRIEND XxX
•:*:• •:*:• •:*:• •:*:• •:*:• •:*:• •:*:• •:*:• •:*
Isn't it funny how
Some special people
Don't even realize that
They're special at all
They're thoughtful
Without even thinking about it
They're always
Right there when you call
They share, not expecting
A thing in return
Yet always seem richer for giving
Isn't it lovely how those special
People can teach us so much
About living
You're one of those special people
THANK-YOU FOR BEING MY FRIEND
•:*:• •:*:• •:*:• •:*:••:*:••:*:••: *:• •:*:• •:*:• •:*:••:*:••:*:•
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_***_____ THANK ____ _____***__
_***______ YOU _ _______***__
_***_______SO___ ______ ***__
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I Want to thank-you from the bottom of my heart for all the beautiful verses candles and pictures you have so kindly put on for our angel even though I haven’t been able to get back to you and do the same although I wasn’t on I was thinking of you all I have just got my comp back but lost everything on it so please bear with me as I have to build everything back up it was so nice to come on and see my angel has been looked after by you all it meant so much thank you especially for being a true friend xxxxXXXXXxxxx THANK- YOU AGAIN xxxxxXXXXxxxx
starchild
Dear dearest Abbie. starchild, and coming to your first anniversary of departing from us. Send your love, your light and your peace tonight and tomorrow to your mummy, your daddy and your beautiful brother, and to all of us to help us through the next long hours. we love you so much, and big kisses to you mist, matt and Reece xxx
xxx
Hi Misti, just to let you know you are in my thoughts. The anniversary of of our babies leaving us is so hard to deal with. I too find that months before the date i am dreading it, its the ' what we were doing this time last year' that is so hard to deal with. You just so want to go back to that time. Eve's 2nd anniversary is in October and already it is starting to play on my mind. It's also hard to believe that its been a full 1 year/2 years that they've not been with us. For the 'dreaded day' i just spent the day with my family talking, crying, laughing and remembering her - i was so relieved when it had passed. I believe that i miss eve the same no matter what the day is but that particular day is so hard because you can remember every hour/minute of what you did with them - if that makes sense? You are in my thoughts , lots of love stacey xx
For Misti
We are connected, My child and I,
by an invisible cord, not seen by the eye.
It's not like the cord that connects
us 'til birth
This cord can't be seen by any on Earth.
This cord does its work right from the start.
It binds us together, attatched to my heart.
I know that it's there, though no one can see,
The invisible cord from my child to me.
The strength of this cord is hard to describe.
It can't be destroyed, it can't be denied.
It's stronger than any cord man could create,
It withstands the test, can hold any weight.
And though you are gone,
Though you are not here with me,
The cord is still there, but no one can see.
It pulls at my heart, I am bruised...I am sore,
But this cord is my lifeline, as never before.
I am thankful that God connects us this way,
A mother and child--Death can't take it away!
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------------OO------ --------------- A CANDLE OF LOVE
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---------OOOOOO----- -------- Just for you Abbie
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---------OOOOOO----- ------- Sleeping with the angels
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---------OOOOOO----- --- Loved and Missed by all
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---------OOOOOO----- -- God Bless Sweetheart
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Well my little sweetheart Abbie, it has been a hard week for me as you know. Reece is certainly alot harder to care for than you as he cries so much more than you ever did, granted he has got an infection in the surgery site in his throat and that has added to his soreness but does he go on! It has certainly been a testing week and i am glad to go back to work tomorrow even if it is for a few hours.
Mummy has thought about you so much this week and i have found it very hard to come on here, but i think of you all the time and we still light your candle at home at 8.54pm. A time that we will never forget.
We went to your garden and Reece cuddled your cross and picture before we left and mentioned in the car that he wished that you were still with us and had not died. I tell him that it is something that we all wish especially mummy and daddy. Your garden is looking lovely and your roses will be out soon if we don't get to bad a frost.
Love you always and forever my beautiful daughter xx xx xx xx xx xx xx xx xx xx xx xx xx xx xx xx xx Mummy xx xx xx
Well my little darling, i met up with some other mums on Saturday and it was especially nice to meet up with Penny, i hope that you have met up with George and are teasing him with brillo pads as he hates the scratchy textures.
Reece had his tonsillectomy on Sunday and it was so hard for mummy to go back up to the wards. We spent so much time there that it was not right to be there with Reece and not with you. Silvia was the nurse in charge that day and she was in charge of mummy on the day that you left me and i had not seen her since that day so that nearly had mummy in floods of tears, remembering it all over again as it so real being there and seeing everyone again.
Everyone was asking us how we are and it was nice to talk with them about you as they know you so they know who i am talking about. Reece got very sad towards the end of the day thinking of you and hospitals and the tears just flowed from him. He wishes just as much as us that you were still with us, and he misses you so much. He often plays in your room before going to school which i find nice and i hope that you don't mind.
I LOVE YOU SO MUCH AND THINK OF YOU ALL THE TIME XX XX XX XX XX WHY AREN'T YOU WITH ME I AM FINDING THAT ALL SO HARD XX XX XX XX XX LOVE YOUR HEARTBROKEN MUMMY FOREVER AND ALWAYS XX XX XX XX XX XX XX
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