A family are asking for help to raise £30,000 for research into a life threatening condition which affects their son.
Little William Orr, from Accrington, is 19 months old and suffers from a rare form of congenital hyperinsulinism (CHI) which hits blood sugar levels.
CHI is an ultra-rare disease affecting children from birth, causing their pancreas to produce excess levels of insulin. This excess insulin breaks down all the glucose (sugar) in the bloodstream, starving the brain and vital organs of the essential fuel they need to work.
This can lead to seizures, lifelessness, and if it is not diagnosed early enough, it can result in brain injury or even prove fatal.
William’s mum Amanda Dean, 33, said her son was diagnosed with CHI shortly after he was born.
She said: “He was five weeks’ premature but he was 9lb 11oz and I had gestational diabetes while I was pregnant and when they checked his blood sugar level, he had almost no sugar left in his body.
“William was transferred to Alder Hey and he was diagnosed with hyperinsulinism within 24 hours.”
William’s condition means he needs round- the-clock care, blood sugar checks and has to eat every four hours, even during the night.
The toddler, who lives with his mum, dad Douglas, 41, and older brother James, eight, on Willows Lane, also takes medication to manage his condition.
Amanda added: “One in 50,000 children are born with this, it can cause hypoglycaemia. William is on medication to try and block the insulin being released by his pancreas and we have to do blood sugar tests every four hours. We have to wake him up during the night to eat as well, CHI doesn’t switch off. His brother James might be a
carrier for the disease, because the type of CHI William has is the genetic form, but we won’t know
until he’s older.”
Amanda and her family are part of a core team of parents who are spearheading the campaign to raise enough money to fund vital research into new drugs.
She said: “The research is needed to find new drugs to help manage the disease and lower the chances of brain damage.
“The drug William is on has thickened his heart muscle, so he’s under cardiology and it also causes excessive hair growth.”
The £30,000 that Amanda and the other families who have children living with CHI are hoping to raise will
be used for medical research, getting drugs approved for treating the condition and support services for families who have children living with CHI.
To donate visit www.indiegogo.com , search for ‘CHI’ and follow the link.