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How SAP saved my child’s life
November 23, 2020 / Advocacy / Family and diabetes / Technology / Child / Type 1

How SAP saved my child’s life

8 min read

Lilith is 10 years old and has been suffering from type 1 diabetes for the last 7 years.  In the past year, due to the onset of pre-puberty and the action of various hormones, controlling and predicting the movement of blood sugar levels has become very difficult.  There is often a sudden, unpredictable and dangerous drop in sugar, which requires my full commitment 24 hours a day with a lot of uncertain moments.  Lilith no longer feels low blood sugar levels and in those moments becomes hyperactive, distracted, and too often forgets to do what she is told, leading to severe, life-threatening hypoglycemia.

Lilith and SAP

 Because of these difficulties, we did our best to purchase a Medtronic 640G insulin pump that automatically stops insulin delivery when a compatible Enlite sensor indicates that hypoglycaemia is occurring, but since the child is older than 8 years, she is not entitled to Enlite sensors at the expense of CHIF.

To use the full potential of the pump, which is not cheap at all, we financed the Enlite sensors for the first 3 months of use ourselves because we wanted to see if it, in combination with the new pump, would allow us a safer and less stressful life.  And something happened that completely justified all the effort invested in the purchase of the pump and sensors.  After 2 months of use, one night in which we struggled with high sugars, I estimated that at 3am I could go to bed because her blood sugar had stabilized.  The assessment was wrong because there was still active insulin left, and I was too exhausted to realize that I was not allowed to go to sleep.

 Alarms rang on cell phones and at the pump, warning that the child was in hypoglycemia, but I was so tired that no alarm was able to wake me up!

 

 The child just got up at 5:10 am, came up to me and said her sugar was 2.8!  The pump woke her with its persistent alarm.  I was terrified!  The pump thankfully cut off the insulin delivery on its own at 4:10 a.m. and was in full swing for a full hour without me hearing anything.  That night, had it not been for the 640G pump combined with the Enlite sensor, which did their job perfectly, we would have lost our child and become part of the black stats!

And that is why I am asking the CHIF to approve sensors compatible with an insulin pump at least for children up to 18 years of age!  We can no longer finance them ourselves.  Financially, we have bottomed out a long time ago because we have been financing diabetes equipment ourselves for years, and now we need sensors that we cannot get at the expense of the CHIF just because the child celebrated her eighth birthday.

 

 We know that the user of 640G pumps is small, that the price difference between Enlite and Libre sensors is small, and not to use the full potential that this pump provides makes absolutely no sense when we know that it literally saves lives!

 

 Hana-Petra Mrčela (mother of a child with type 1 diabetes)

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