Family of Corby girl with '˜ultra-rare' condition hope to raise £30,000

The family of a four-year-old girl from Corby with an '˜ultra-rare' disease are hoping to raise £30,000 to fund research into the condition.

Thursday, 14th April 2016, 5:29 am
Alliza-Lily Walkley suffers from an extremely rare condition called congenital hyperinsulinism
Alliza-Lily Walkley suffers from an extremely rare condition called congenital hyperinsulinism

Alliza-Lily Walkley suffers from an extremely rare condition called congenital hyperinsulinism.

When she was just six days old, Alliza-Lily collapsed at home. She became blue and lifeless, and suffered from severe breathing problems.

Her mother Michelle dialled 999 and Alliza-Lily was quickly taken to hospital.

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Alliza-Lily Walkley

After being admitted to a Special Care Baby Unit, doctors diagnosed congenital hyperinsulinism (CHI).

CHI is an ultra-rare disease in which the pancreas produces too much insulin.

As almost all blood sugar is removed from the body, the brain and vital organs are starved of their fuel.

If it is not caught early enough, CHI can lead to permanent brain damage or even death.

Alliza-Lily Walkley

Many babies with CHI have had to have an operation to remove their pancreas – a frightening procedure in such a small baby.

Instead of producing too much insulin they then produce none, which results in a serious case of life-long diabetes.

This itself carries significant risks.

Fortunately, Alliza-Lily responded to a drug called Diazoxide and was able to keep her pancreas.

Alliza-Lily Walkley with mum Michelle

This drug, however, can have limited efficacy and children with CHI are often unresponsive to it.

Today, Alliza-Lily is a happy, bouncy child, but the condition still requires constant intervention and there’s a daily risk of serious complications.

Alliza-Lily struggles to gain weight and is developmentally behind.

She has a stomach peg fitted to aid her feeding and maintain her blood sugar levels, and to hopefully help her gain weight.

Alliza-Lily Walkley

This has a huge impact on the family’s time, energy and lifestyle.

Recently, however, there has been considerable promise in a drug called Sirolimus, which prevents the necessity of removing the pancreas and might allow the condition to stabilise.

Researchers currently don’t understand Sirolimus’ mechanisms, which is crucial if it is going to be developed as a treatment.

Raising £30,000 would enable the crucial research needed to fully understand how Sirolimus can be used as a treatment for CHI, and give Alliza-Lily and other children with the condition better chances in life.

To find out more and donate, visit igg.me/at/cure-chi.

The crowdfunding campaign will end on Wednesday, May 4.

Alliza-Lily Walkley
Alliza-Lily Walkley with mum Michelle