Abbie Grace Brandon

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