| Location | Luton Beds |
| Age | 2 years |
| Date of Birth | 21/12/2004 |
| Date of Death | 03/07/2007 |
| Visitors | 6,986 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
Those left behind have been touched by angels
On February 19,1982 I gave birth to an angel sent to me and my family. Though she has left my arms since November 28, 1986...she has never left my heart. The blessings that she brought me and my family will live on in our lives until we meet again in heaven. I feel your pain and loss as I read this on Christmas Eve at work, but I also know your strength and wonders that you have and will keep with you always from your daughter's unconditional love that she gave you. Find peace with life and know that we were truly blessed in life. Where others find sadness, we know love. Although they are gone from our arms, they are always a part of our soul.
Cockayne Syndrome...a word not many know...but to those who do ...have had the blessing to truly know an angel.
Love, Mary Beth
xx thankyou Misti xx
Thankyou Misti for your message, your right christmas is extra hard for us. I always remember feeling that eve was already special because of the time she was born. It's hard to think of our babies as another year older, even though eve would be four i always imagine her as my little 2 year old baby! Abbie seems like such a little fighter, her little smile is so beautiful. You're right though our special babies always came first and it's so difficult to alter our lives after they have gone. They make us so much stronger and appreciative than the average person. I'm 30 now and have no other children and sometimes doubt as to whether i ever will, i sometimes think i could'nt love any other baby like i loved eve? I'll be thinking of you and your family over christmas, they may not get any easier but the first is always the hardest. You will get through it though Misti because like i said your little girl has made you such a strong person. Sending you lots of love ... stacey xx
Hello my darling Girl, sorry no candles yesterday but it had to be a day when the computer just wouldn't work and i don't know when it will be fixed. I hope that you caught one of your balloons yesterday or saw them flying up to you.
What a hard day it was for us yesterday and what the computer breaking and nanny Mary rung to tell me that someone had stolen your lights from your garden and that made me just so mad.
We are now down visiting with Nic, Tim and Hamish hence why i have been able to write this now and they send you all their love and Hamish and Reece have been talking about You and Naomi, so let her know that from us will you.
Love you always and forever my little sweetheart, and i will try to get the computer back on monday but i don't know when as alot of people will not be working at christmas so lets hope that we can get it fixed. Unti then just remember that you are always in my thoughts and we light a candle for you every night at home,
Love you, your proud mummy Misti x x x x x x x
THANK-YOU X
•. ♥.•°.°•.♥.•°.. ♥.•°. °•.♥.•
YOU ARE ALL IN MY THOUGHTS
•. ♥.•°.°•.♥.•°.. ♥.•°. °•.♥.•
Me and my family would like to thank you from the bottom of our hearts for all your continued support I was unsure at first when my daughter kindly set this site up for Stuart I found it so very hard at first but it has been so much of a comfort to me to know I can just look through his site and read all the lovely candles tributes and lovely pictures that have been put on for our special little boy it really does help and to know I have found so many very dear friends who understand and care I am so sorry if my candles are a bit hit and miss at the moment I hope you have a lovely Christmas and new year and again thank-you for all your support love to you as always hopefully our angels will be watching over us and helping us at this very difficult time xXx
¸.•´`♥ ¸.•´¨) ¸.•*¨)
(¸.•´ (¸.•´ .•´ ¸¸.•¨¯`♥
Those whom we love go out of sight,
But never out of mind;
They are cherished in the hearts
Of those they leave behind
*♥(¸.•*´♥X ♥ `*•.¸)´♥`*
happy birthday to a special little girl
happy birthday darling hope you have a nice day{hope my barry sang to you} godbless abbie sleep tight xxxxxx
Happy Birthday
Happy Birthday to Special Angel.
My thoughts are with your family on your special day.
Abbie your site has so beautifully been created by your proud MuMMy.
godbless abbie free from pain , you was a very special little girl born to a special mummy and daddy, abbie look out for my barry he was very special too he will love to play with you as long as you like music he loved it sleep tight darling hope santa brings you lots at christmas xxxxxxx
Morning our little Flower Fairy, daddy and i went to our group yesterday and it is so nice to talk to other parents about you and not feel uncomfortable or if we are going to upset them. Well not long to go now till your birthday and mummy has ordered some beautiful balloons so i hope that you see them or maybe catch one. Nanny brought down a bauble for the christmas tree wishing you a merry christmas and it got me crying before we even left for the group. I can't talk about you much lately without crying as i am finding this so hard at the moment to deal with, especially with your birthday coming up and christmas. I am hating it that you are not here with us. xx xx xx xx xx
Thinking of you always and Reece has been talking about you alot lately and got quite upset when he didn't a card from you for his birthday so he got daddy to write your name in a card and he drew some kisses in it from you. Love you so much xx xx xx xx xx xx your mummy
Hi there i hope you don't mind me writting. I just came across Abbie's page and started reading about how brave she was. My heart goes out to you my little girl died at the age of three and you are right, nothing can prepare you for it. Bobbi was extremely disabled too (although i prefer to call her special) she also suffered from hypothermic episodes but we never got to the bottom of why it was happening.
I can completely understand and empathise with what you said about trying to build a new relationship with Reece because i felt the same with Bobbi's twin sister it was hard getting used to it just being me, Gareth and Danielle but we get through and we've got a little boy now too.
I just wanted you to know that i know what you are going though and that you are in my thoughts. Emma xxx
Sweet Pea
Morning my little sweet Pea Ab Dabs, Daddy, me and Reece went to your garden yesterday and saw your lovely lights. Daddy says that when your lights all go red that is you saying Hello, and when we were there and talking to you your lights were going red ever such alot. Reece told you that he loves you and your lights went red to let him know that you love him to. It is so lovely to go there but so very hard to walk away and know that you are there and not with us all. It has been 19 1/2 weeks since you left us all and not a minute goes by that we don't all think about you. Reece talks about alot and has been playing some music for you and singing to you, he says that you are in his heart and always with him. This just shows us and you how much he does truely love you Abbie and how he misses you not being here. Daddy and I went to the group meeting on Tuesday and we talked about you ever such alot and mummy cried alot and i felt so sad the next day. It just brings it all back to mummy how i lost you and what i have lost with you not being here with me. I am so glad that i had my time with you but it is never long enough.
I will Love you forever and a day Abbie, and you will always be my precious daughter. Lots of kisses wrapped up in a warm hug sent up to you xx xx xx xx xx xx Mummy xx xx xx
Create an ever lasting memorial for your loved ones.
Start here »
Using the options below you can add this memorial to your personal garden.
| I am Abbie's ... | |
| Add to Garden: | |
| Notifications: | Text Message |
There have been 1129 candles lit for Abbie.
