Captain's Charity 2026

Children's Hyperinsulinism Charity - https://hyperinsulinism.co.uk/

What is Congenital Hyperinsulinism (CHI)?

Congenital Hyperinsulinism (CHI) is a rare but serious condition that affects how the body regulates blood sugar. It is the most common cause of persistent hypoglycaemia in infants and children. Understanding how CHI works, and why early diagnosis and treatment are so important, can help families, carers, and healthcare professionals support children living with this condition.

Hyperinsulinism is the inappropriate and unregulated insulin secretion in relation to the blood glucose concentration. It is the main cause of recurrent and persistent hypoglycaemia in infancy and childhood and is a major cause of hypoglycaemic brain injury.

Normally, blood glucose levels are regulated by insulin secretion, however, in Hyperinsulinism, the beta-cells of the pancreas release insulin inappropriately all the time causing low blood glucose levels (hypoglycaemia). The high levels of insulin prevent ketones being made and so the brain is not only starved of its vital fuel glucose, but also prevents ketone bodies being used as alternative fuels.

When the brain has no glucose or ketones to use as fuel then the child is at risk of seizures, loss of consciousness and even brain injury.

Amelia’s CHI Story (this is Steve's grand daughter)

By CHI Mum Leanne

Due to Amelia’s large gestational birth weight, her blood glucose levels were checked, which led to a diagnosis of Hyperinsulinism (CHI).

Amelia was finally discharged from hospital at 4 months old. Amelia is now 11 years old but CHI has never gotten any easier and Amelia still has severe and dangerous hypoglycaemia despite continuous intervention.

Amelia has daily injections, regular blood sugar monitoring as well as a dexcom and a peg to help manage Amelia’s blood sugars. The peg is used for continuous feeds whilst she sleeps and emergency glucose boluses, then she has regular feeds through the day as her fasting tolerance is very low.

We’d hoped by now we’d see some improvement but despite how hard it gets and despite the unknown Amelia is always smiling!