Stories Matter

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Stories Matter

Stories Matter. Do I think the little images I write as part of each skein matter? No, I really don’t. The process of creating the yarns and the images matters to me. But the end result, not so much. But there are stories that matter and make a difference in the world. One such story is that of a little girl called Kycie.

Kycie’s story touched me deeply from the very beginning, because it started in such a similar way to my own daughter’s story. At the tender age of 5, Kycie developed the unpreventable, incurable, autoimmune disease Type 1 Diabetes. Tragically for Kycie, and for far too many others, her condition went undiagnosed. Doctors told her parents she had the flu. By the time she was flown to hospital she was seriously ill with diabetic ketoacidosis (DKA – the result of undiagnosed type 1 diabetes). Against all the odds, Kycie survived, but she was left with a traumatic brain injury as a result of the severe DKA she suffered. She and her family did such a great job of working towards recovery. Kycie spent months in hospital working through intensive therapy to help her move, help her regain some control over her muscles, maybe even speak again one day. Kycie captured so many hearts, particularly from those of us who’ve had our own brush with DKA.

My daughter’s story was not one of misdiagnosis. She developed type 1 diabetes at an incredibly young age. She was just a baby; hadn’t even celebrated her first birthday. Her diagnosis wasn’t missed, it simply progressed so fast in her tiny body that her first contact with medical professionals was when her body was failing from severe DKA. It’s a shocking thing to see your child go from completely healthy to a critical care bed over just a couple of days. Somehow she survived that first day, but we wouldn’t know until she came off the sedation and artificial ventilation whether or not she had sustained either brain injury, or even brain death. Most children who die from DKA die as a result of cerebral oedema (brain swelling). When her sedation was turned right down , it wasn’t to allow her to wake up, it was to see whether or not she started moving again.

Somehow, my beautiful daughter made a full recovery. (Aside from the non-functioning pancreatic cells which means she will forever be dependent on an uninterrupted supply of synthetic insulin to stay alive.) Kycie’s story has always been one of ‘There but for the grace of God go I.’ I have such a deep admiration for what her family have achieved in the midst of all they have had to cope with. They have shared and shared every part of their story, they have raised awareness of this deadly condition. They have pushed the message of the ‘Test 1 Drop’ campaign out there. They have saved many other children’s lives with their publicity campaign, and ensured that these children were diagnosed early enough that their lives were not put in danger.

Type 1 diabetes is unpreventable. Death from DKA is almost entirely preventable. All it takes, at the slightest suspicion of diabetes, is to test one drop of blood. Please familiarise yourself with the symptoms, and share this image:

test1drop

It is with profound sadness that we heard the news of Kycie’s death, around 6 months after her diagnosis, on Saturday the 11th of July 2015. The Type 1 community is further reeling from the death of 4-year-old David on the 12th of July, also from DKA, also after his symptoms were misdiagnosed as flu. Their stories will outlive them, and go on to do good in the world. But right now, there is a lot of sadness, a lot of pain and a lot of grief.

Both families are families of faith, and sharing Kycie’s story over these last few months, it is extraordinary to witness the strength that these parents have derived from their worldview. The following prayer was written for these and too many other children by Richard Bailey:

For a loved child

Father, you know the desolation we feel when a loved child is parted from us by a fatal illness. It is a sorrow that you have felt at the death of your Son, Jesus, and which you feel every time a loved child dies. Each one of us is one of your beloved children. So we turn to you, as our loving Father, in our sorrow. Take our loved child into your arms, for in your presence all things are made new. In your presence there is healing and new life. So, take our loved one into your presence, and keep her in safety, until that glorious day dawns when we shall be reunited in your kingdom, where all sorrow has an end.

You can find Kycie’s story at Kisses for Kycie.

If you would like to help the Type 1 community, please consider donating to JDRF.

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2 responses »

  1. Pingback: Cherished | Story Skeins

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