Thursday, April 19, 2012

A Plucky Young Girl called Clara

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.  .

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.”

Now if you would like to help raise awareness and secure more funding you can find out how here. You can contact your MP, sign the petition or simply help spread the word

1 comment:

  1. Well done Caroline for spreading the word. Maybe we should start a campaign to tell the world that Type 1 is as different from Type 2 as a mouse from an elephant... Type 1 arrives in lives like a grenade and there is nothing that could have been done to prevent it. Clara is an ace example of how to cope with inspiration and grace, and a whopping great grin. Good on her for taking that grin, grit and determination to Westminster!!