Scarlett's story leads fundraiser for pioneering treatment

Back in 2012, we reported that three-year-old Scarlett Hammond was born with a rare condition called Congenital Hyperinsulinism (CHI), which causes her body to produce excessive amounts of insulin.

After months of hospital stays, the youngster became the first person in the world to use a pioneering drug Sirolimus to treat the condition in what her family hoped would transform her life.

And a crowd-funding campaign has been launched in hope of raising £30,000 needed to continue tests on the treatment and help roll it out to children in need right across the UK.

Her parents, Kelly Godfrey and Matt Hammond, and older brother, Mikey, who live in Hill Street, are hoping to pull in funding support through an online fundraising campaign.

Talking about the condition her mother, Kelly, said: “When you have a baby you think everything will be fine and normal and you don’t expect what could come next.”

Her father, Matt, told the Courier: “As a result of using Sirolimus, Scarlett has avoided major surgery which is a major breakthrough in the treatment of this disease.

“We are fundraising to fund further research into helping treating children with CHI, raising awareness of the condition and providing conferences for families.”

The pioneering treatment has so far helped balance the levels of insulin produced.

But her condition still has had a dramatic effect on her family’s life as the youngster needs an life-saving injection every six hours and regular blood sugar tests through the day.

Her parents said she often becomes unwell and has to be taken to hospital immediately.

But they have high hopes of her condition stabilising as she grows up - something which would not happen if she had her pancreas removed to prevent all insulin production.

The fundraiser is being led by Findacure and the Children’s Hyperinsulinism Charity who hope to find a cure for the disease which affects one in 40,000 children.

Flora Raffai from Findacure said: “We are trying to raise £30,000 to fund vital research into CHI to save the lives of thousands of children affected by this terrible rare disease.

“Scarlett is now three-years-old, and is a happy bubbly little girl.

“While her condition still requires regular treatment, she’s growing and developing at the same developmental level as her peers.

“She hasn’t had to have her pancreas removed, and there is hope that her condition may stabilise over time, and she will be able to live a more normal life.”

Symptoms of the condition include floppiness, shakiness, seizures, fits and convulsions, due to low blood glucose levels - and Scarlett’s were spotted within hours of her premature birth at Warwick Hospital.

The condition can lead to severe brain injury or even death, with most sufferers having feeding problems.

Until the new drug was released, the only treatment was to remove the pancreas completely, but this can cause other problems later in life.

As researchers don’t fully understand the mechanisms of the new drug, extensive trials are needed to develop it as a wider treatment.

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