ISTAT Machine for Conor

Conor is a 5 year old boy.

Conor has a rare genetic disease called APS-1 (autoimmune polyglandluar syndrome) there are less than 1000 people diagnosed worldwide.

This causes Conor to suffer with hypoparathyroidism, autoimmune hepatitis, autoimmune entropathy, addisons disease, pernicious anemia and malabsorption.

His hypoparathyrodism and addisons are difficult to manage due to his malabsorption.

Hypoparathyrodism is caused by his body attacking his parathyroid glands and as a result he is unable to regulate calcium. Low calcium and high calcium both cause life threatening symptoms. He is the first and only child in Scotland to be given the parathyroid hormone through subcutaneous continous insulin pump.

Addison's disease means his body has attacked his adrenal glands and he doesn't produce his own cortisol for which he takes daily steriods. However normal illness can affect him and we have to give him sick day dosing to prevent him from going into an adrenal crisis which can also be fatal.

Currently for monitoring we go to our local A&E where his levels are checked by a capillary blood gas. In 2023 we went over 147 times. Frequency is due to the unstable nature of hypoparathyroidism and that when he's unwell and we have to give him extra steriods this also affects his calcium and then have to monitor daily for the duration of his illness.

There is a machine called an I-Stat machine which would allow myself and Dale to do his bloods at home. The NHS have agreed to cover the yearly running cost of £10,441.78 but we need to raise £7,160.53.