Clara is my boss's eldest daughter. She is a cracking girl. She is the first one into the office when she gets home from school (we work out of our boss's home) to say hi and tell us about her day. She is also wise beyond her years. Clara has type 1 diabetes and next week is one of only 3 representatives from Scotland going to Westminister for the first
JDRF Type 1 Parliament. Below is some of the press release that has gone out today. I cried reading this. Maybe because I know the family, maybe not. Please read and spread the word. Thank you.
Eleven year old Clara Cameron has won
a competition to attend the first Type One Parliament. A day long flagship
event at Westminster on Wednesday April 25th commencing at 8.15 a.m.
Clara, who lives near Dunkeld in
Perthshire is one of only three children from Scotland and the only
representative from Central and Southern Scotland.
Her win was
through a competition run by event
organizers JDRF - the Juvenile Diabetes Research Foundation. www.jdrf.org.uk .
Clara was
diagnosed with Type one diabetes on her 6th birthday, now 5 years
ago. (Her father, Charlie, is also a Type 1 diabetic.) Since her diagnosis life
has been a roller coaster, due to this very serious and life long disease.
Clara lives with her parents and has two younger sisters. All her family have written about how it has
affected them. Quotes further on in this press release.
Why is she going to Westminster
although health is a devolved matter in Scotland? Because the
medical research budget is much larger in Westminster. The Medical
Research Council (MRC) which is responsible for setting the research agenda and
identifying research priorities (of which we would like type 1 to be top of
their list).
Key
facts – of the £51m allocated for research into the growing problem of diabetes
only £6m was applicable to Type 1. Those diagnosed with Type 1 in the under
fives is growing five fold a year.
It is essential to raise the profile of Type 1 diabetes, which is very
different from Type2.
How
does this condition affect Clara and her family?
Clara (11)
wrote that
“When I got diabetes I
felt … scared and terrified of what I had ahead of me.. awful, sad and upset
that I had been diagnosed and annoyed.
But better in some ways, for I felt awful and ill when I had not been diagnosed. Daddy
had to cling onto me so that I would let the nurse do an injection, and we were
in the ‘quiet room’ as they called it but I was making a terrible racket.
“ Even when I am feeling down I just have to
think that I am still alive and that there are other people in this world with
worse diseases and in the country.”
Her youngest sister Grace
(aged 7) remembered that :
“I wanted to know what
it was. When I knew it was diabetes I
was very sad and I wish I could change it. I wish I could make an inventions
what takes away diabetes. I don’t like
it when she is low (her blood sugar level falls) she is shouty, but I know it
is not her fault. I can remember when
daddy told me and Amy that Clara and Mummy had gone to hospital.”
Her other
sister Amy (aged 9) said how
“Scared, upset and
worried she was when they found out about her
diabetes. We felt as …. we were
in a dream . She gets tearful sometimes. Me and Grace always feel worried about Clara
even if she is not low or high.”
How does type 1 differ to type 2 diabetes?
Type 1 diabetes is a very different,
distinct condition to type 2 diabetes. Type 1 is not
linked to lifestyle choices, such as diet and exercise.
Type 1 diabetes is caused by a problem
with the immune system that causes it to turn on itself and destroy the cells
in the pancreas which produce insulin.
People living with type 1 diabetes
rely on multiple daily insulin injections or pump infusions and finger prick
blood tests every day, just to stay alive.
Fiona Cameron, Clara’s mother wrote:
“I thought – my goodness she is having
a big stretch because she was becoming skinny. She was then peeing her bed two
or three times per night. I went in to
her room one night and saw the dark circles under her eyes, along with another
wet bed. I went in to our room and the only thing I could see was my Charlie’s
(my type 1 diabetic husband – Clara’s father)
test kit lying on the bed – it was as if there was a light shining on
it.
“I tested her and then spoke to the
doctor at NHS 24 who was very kind and lovely. I was clinging on to straws and
said to him ‘is there ANY other explanation why her blood sugar could be this
high?’ He said NO, - I then remember saying, ‘so, THIS IS IT’. I went
downstairs and showed the blood sugar meter to Charlie. He sobbed his heart out
(the only time he has ever been able to cry about this).
“We had specifically been told by a
diabetes specialist doctor that our children were HIGHLY unlikely to develop
diabetes Maybe I would have worked it
out sooner if I wasn’t actively thinking that it was NOT going to happen to us?
As it was, we still diagnosed Clara very quickly –she had no ketones and therefore
no long term damage even though her
blood sugar was 33. (A non Diabetic will have blood sugar of between 4 and 5).
“It was her 6th birthday.
“I wasn’t scared of managing the
condition because I had been doing it for years, but this does not make the
diagnosis any less upsetting – perhaps even more so as you know what is ahead.”
“I was and still am so so sad about the
brutal removal of what should be a basic right of every child – freedom.
Freedom to run up a hill at a whim, freedom to eat chocolate sundaes until you
are sick just because your Mum isn’t watching, freedom to jump in to a car at
the last minute with friends; everything needs to be planned.
“The number of people who I trust to look after Clara is dramatically
reduced. She CAN do EVERYTHING, but it just requires a few seconds thought and
planning before hand. An easily treatable hypo could turn in to a disaster
without dextrose or other fast acting energy on hand. All of my coat pockets,
handbags etc are full of dextrose and the same goes for relatives and the
parents of Clara’s close friends. Her teachers and other school staff carry
glucose on them at all times and her own friends are always quick to share a
snack if they think she needs it – they are all now fabulous at recognising the
symptoms of a hypo.”
“I found myself worrying about the
future in those first few days – what is it going to be like when she is
pregnant – but she won’t be able to be a fighter pilot – but she won’t be able
to join the army etc etc. Do I want her to be a fighter pilot – not
particularly, but do I want her to have these choices restricted – not at all.
“I literally felt as if my insides had
been pulled out. We were just devastated.
“Stupid things people say – ‘oh well,
it is only a pen these days’ ‘oh well, they are making such great advances’ ‘oh
yes, I know all about diabetes – my 90 year old 90 stone gran has it’ ‘oh, too
many sweeties was it’. All around us it seems that we have got posters saying –
breast feed your child and protect against diabetes – exercise and….. eat well
and…… I DID breast feed her, we DO exercise and we DO eat well. I think that
this gives other people the message that we have done something wrong. Extra
guilt and pressure that you don’t need when you secretly are wondering every
day if there was something you could have done to prevent this happening.
“One child came up to me completely
straight faced and said ‘I am not going to invite Clara to my birthday party
because there will be lot of running around’.
“I am absolutely constantly ‘on watch’
for her; unless someone I trust implicitly has got her. We are lucky enough to
be surrounded with incredible friends who are prepared to learn about the
illness and look after her and I am very aware that there are so many parents who
do not have this support.
“We hope that Clara’s trip to
Westminster will highlight the implications of Type 1 diabetes. “
Monica
Stewart, Clara’s grandmother wrote:
“Of
course, it might be a drunk or a friend in San Diego with their time zones
muddled, but when the phone rings at 4 in the morning, my heart is still
banging in my ears by the time I find the receiver – and it’s my daughter Fi,
sounding as if she’s running, Just coherent enough for me to understand that
she is on her way to Ninewells with Clara who has diabetes. No question, even though she has diagnosed it
herself – she tested her with Charlie’s kit.
(Clara’s father Charlie also has Type
1 diabetes)
“There had been some symptoms – bed wetting,
tiredness – and her urine had been tested for infections but not, as Fi & Charlie had assumed it would
be, for diabetes.
“By the time I get to Ninewells later that
morning – pausing briefly to argue with a parking warden who was slapping a
ticket on Fi’s wide open car – Fi has projected forward quite a lot – Clara
will have trouble: getting into the army
and several other professions; doing many sports; conceiving a child; driving
an HGV; travelling abroad.
“All I can do is hold my sobbing daughter
and suggest we concentrate on the next few weeks first. Or even that first, ghastly day when we watch
Clara run, screaming, away from the nurse who is trying to show her how to
inject. Charlie is incredible, hiding
his heartbreak and trying to show his 6 year old [on her birthday] that it is,
in fact, very easy.
“There are,
undoubtedly, advantages to knowing a lot already about this condition,
but it does mean that the diagnosis is a road crash of knowledge rather than a
slow dawning of implications. Both
ultimately terribly sad for the family, but perhaps the latter is kinder on the
system – I don’t know.
“I cannot speak too highly of the diabetic
team in Ninewells, particularly Val, the liaison nurse who was and is a tower
of strength and support. I am horrified
to learn that her funding has been cut.
“For the rest of the
family and close friends, looking after Clara poses challenges. Knowing Clara
so well, Fi and Charlie can just glance at her and be fairly certain if she is
high or low – although sometimes she’s wrong – she may just be being an
ordinary 11 year old – tired, excited, naughty, angry with her sister. If her levels are too high or low, you think
you are doing the right thing, but it can take a long time to correct, or
sometimes over-correct.
“Hopes for the
future? That the treatment gets more
& more refined and that the blood sugar monitoring will be linked to her
pump – more like an artificial pancreas.
I feel it can be achieved with the necessary will.
“Magic wand? Better education, understanding that the
injection is NOT the worst thing about diabetes?
“Benefits? An unbelievably empathetic, mature young girl
– she may have turned out like this anyway, but boy she is good at putting herself
in other peoples’ shoes.”
