Raising Awareness

Okay, so unfortunately for us we have a few conditions that control our lives.

I have Type 1 Diabetes but it’s not been as simple as the condition is known to be. I was diagnosed at the age of 12, just before my 13th birthday. Initially I was quite excited to be diagnosed with a condition I knew nothing about and had never heard of  but this was just my naivety. I was young and although I was told it was a life long disease, I don’t think I really took that to heart. After a year, roughly, I rebelled against my condition deciding, being young and silly, that I would stop using my Insulin and forget about the condition I was diagnosed with. I became really poorly and from this point onwards swore that I would never purposely forget to take my Insulin again. After suffering a car crash in which I was a passenger in, I became seriously unwell with pancreatitis. I bounced back and forth having recurrent episodes of a deadly illness relating to my diabetes called DKA. I did this from the age of 17 until the age of 20. In the last few months of 2011 and first few months of 2012, I had multiple tests done which concluded I have antibodies which reject my Insulin. My local hospital had to send me to Kings College Hospital in London to get the answers I was begging for. I had gone through years of mental abuse from doctors saying I wasn’t administrating my insulin and doing it to myself, despite me being in hospital for weeks at a time at points and my blood sugars bouncing whilst being in there care. To get the words, ‘You have antibodies that reject your Insulin’ was more than a diagnosis; it was the end of a tortuous time! I returned to my local hospital who put me on an Insulin pump and it has been the LIFELINE that I needed. Because of the constant HI blood sugars, it has damaged my bowels, bladder and kidneys. I have had a handful of DKA episodes since 2012 but that is 5 years of a life being granted to me. 5 years that has welcomed 3 children, 2 living and 1 angel. I’ve lived 4 more years than the doctors told my parents and that is truly down to ‘Percy the pump’.

Both my sons were born prematurely. My eldest born at 33 weeks + 3 days and my youngest at 32 weeks + 6 days. My youngest is perfectly healthy but seriously suffers with eczema and my eldest has multiple serious conditions.

My eldest son has Tetralogy of Fallots, a congenital heart defect which he’s had since birth. He was delivered via an emergency C section at 33 + 3 weeks gestation. We were told before the birth that the likely hood of him needing help breathing and stabilizing his blood sugars was inevitable but what was to come was a complete shock. 6 hours after his birth we were told he had a congenital heart condition (CHD). It’s basically 4 things wrong with the heart. He needed intubating because he wasn’t responding to normal or pressurised oxygen therapy. He spent 8 months in hospital having two major heart operations, one being open heart surgery, lots of cardiac catheters, multiple examinations and tests needing a general anaesthetic, all bringing risks of their own and he had his aryepiglottic fold trimmed. He spent near enough the first two years of his life on oxygen, now only needing it as and when. He is PEG fed (a tube into his belly), to administer medications and prescribed milk which has lots of calories in. He is the most courageous little boy I have ever met taking everything in his stride. His loving nature and charismatic charm makes every minute worth it. His life is still very much in the hands of the cardiac, respiratory and gastro team but I have every ounce of faith in them.

Lots of love,
C
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One thought on “Raising Awareness

  1. Pingback: Stronger Than A Heart

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