Saturday, 6 August 2011

Today's run is dedicated to Emily Brown

I'm dedicating today's run to Emily Brown.  Emily is 7 and was diagnosed in April 2009.  Emily lives in Amesbury, Wiltshire with her Mum Laura, Dad Iain and 7 year old sister Katie.

Laura told me:

"It is relentless. You never get a break from type 1 diabetes. You have to think about it constantly. As a parent of a six year old child with diabetes, I have had to learn how to inject my child, how to count the carbohydrate she eats at each meal and latterly how to use an insulin pump. I record everything my daughter eats, I test her blood sugar on average 12 times a day. I am constantly looking at all the information I have gathered and trying to interpret it to see how I can improve control of her blood sugars. I have two very big fears for my daughter."

"One is that she will suffer a severe hypo and become unconscious or worse. This fear is particularly prevalent overnight, so I wake up at 2am every night to test her blood sugar to ensure that she is safe. The second fear is that I may fail to control her blood sugars well enough to prevent her getting diabetes related complications in the future. I am very conscious that by the time my daughter is twenty she will have had diabetes for fifteen years. As a parent, how could I look my daughter in the eye if she developed eye or kidney problems at that young age, because I had not managed to control her diabetes to the best of my ability whilst she was younger? I am lucky in that I have a very supportive team at our local hospital who recognise my efforts and concerns and do their best to help. My daughter has been able to access an insulin pump and that has made a huge difference to the quality of her life and also to the control we manage to get, hopefully helping to reduce the likelihood of long term complications. However, even with this support I feel that as a family we face huge battles constantly. Her twin sister has had to learn to take a backseat at times as we are dealing with diabetes - changing infusion sets, testing for ketones, testing blood sugar, counting carbs, filling insulin cartridges. Her sister is constantly being asked to "wait a minute." Whilst my daughter with diabetes has had to deal with sitting at school and watching all her class mates eat cakes and she has had to bring hers home so that it can be carb counted and she has the right amount of insulin for it. She has had to come to terms with having daily injections, then infusion sets put in. She has to deal with feeling rotten every time her blood sugars go out of range (which sadly is quite often, despite a tremendous amount of effort being put in). She also has to put up with being woken at night and force fed glucose tablets if she is hypo or having a new infusion set inserted if there appear to be problems with her pump. I am constantly on call."

Laura adds:
"I receive on average two or three phone calls a week from school with diabetes related issues that I need to deal with. I also end up having to go into the school on a regular basis to deal with problems that have arisen. This makes it very difficult for me to work. It is nearly impossible to get a break from diabetes as very few people are willing to look after my daughter due to the extra responsibility of having to deal with her diabetes. For instance recently my daughter asked my mother "Nanny, when can we come to your house for a sleepover again?" To which my mother replied "You can't because I don't know how to work your insulin pump." My daughter is a bright, sensitive, kind and sociable six year old and I wish more than anything that she didn't have to face the challenges of living with diabetes."

Read Laura's entry on the JDRF 1 Campaign scrapbook:§ionTitle=Type+1+scrapbook+gallery+%2D+how+type+1+affects+other+people%27s+lives&page=14&profile=155

I'm proud to dedicate today's run to Emily and her family.  Today Pat and I are are running the "Trombone Trail" - Full details on this run later...

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