A Marham family are leading a campaign to help raise awareness and fund treatment towards their daughter’s ultra-rare disease.
Amelia Lily Clough, 3, was born with congenital hyperinsulinism – a genetic condition, which causes the pancreas to secrete excessive amounts of insulin.
Her family, with the support of Findacure and the Children’s Hyperinsulinism charities, are now hoping to raise £30,000 after launching a joint crowdfunding campaign for research.
Amelia’s mum Leanne said: “When Amelia was first transferred to Great Ormond Street, we had no idea of the diagnosis to come and the severity of the situation.
“Amelia’s blood sugars while in neonatal intensive care were dangerously low even though she was born a healthy 10lb 6oz. If her blood sugars hadn’t been checked. the situation may have been much worse.
“We want to help find a cure for this awful condition and raise awareness about it.
“Low Blood sugars in a neonate are extremely dangerous. A neonate is at a higher risk of brain damage if low blood sugars aren’t diagnosed and treated.”
Amelia Lily has a gastric tube fitted to control her feeding and blood sugars and can only go 2-3 hours without food, meaning she has to be constantly monitored day and night.
Leanne said: “Medication is four injections a day and it’s becoming more difficult as she gets older as she is aware that it’s coming.
“We have tried a few medications but no child responds the same to any medication, so you can’t get any predictions on the future.
“She will remain on four daily injections, two-hourly oral or peg feeds and a continuous over night feed.
“The Hyperinsulism is due to a gene from me which means she is unlikely to grow out of it, she may be better managed but never be HI free.”
Recently there has been considerable promise in a drug called Sirolimus, which prevents the necessity of removing the pancreas.
Raising £30,000 would enable the crucial research needed to fully understand how Sirolimus can be used as a treatment for Hyperinsulinism, and give Amelia Lily and other children with the condition a better chance in life.