A NEW charity set up to support children diagnosed with a rare condition Congenital Hyperinsulinism (CHI), has been backed by their families, including the parents of an 11-month-old baby, in Stratford-upon-Avon.
The Children’s Hyperinsulinism Charity was recently founded by five parents who support each other, as their children all have CHI.
It aims to give families in a similar position to them, a chance to socialise, as well as educate others about the condition.
Although parents Emily Brookes, 26, and Joe Brookes, 28, who are both former Stratford High School pupils, didn’t help set up the charity, they have been supporting it when they can.
One of the charity’s first fundraising events was held by their friend Ellie Robbins, also from Stratford, who raised more than £500 at the Spring Wolf Run, in April.
Last July, Emily and Joe were unaware their baby son Ezra was ill until he was discharged from Warwick Hospital, soon after he was born.
Shortly after settling in at their family home in Church Street, Ezra was re-admitted to the hospital, as his blood had an incredibly low glucose level reading of just 0.02.
Ezra was then in hospital for the first 11 weeks of his life, eight of those were spent in Great Ormond Street.
Emily said: “Eventually we decided that he needed a gastrostomy inserted so we could manage his feeding better. In the meantime he was given a nasogastric tube through his nose and into his tummy so we could tube feed him that way. He is also put on a feeding pump overnight.
“He is now doing great and is as stable as he has ever been, but Ezra has about six different medicines. Three are for his blood sugars and the rest are to counteract the side effects.”
Emily, who works one-day a week as a sales assistant at Gemini, in Wood Street, said that Gemini has been fundraising for the charity throughout the year.
She said the charity is very supportive, and the parents involved try to meet up regularly. The charity is also looking at holding informative conferences to support each other, as well as meet other families living with CHI.
She continued: “We check Ezra’s blood sugars three-hourly and worry constantly as environmental factors affect his sugars too. This means not getting too cold, and not being allowed in direct sunlight due to his photosensitivity.
“He is at a constant risk of brain injury, seizures, coma and death if his blood glucose levels are too low.”
Additionally, the family have a health visitor, community nurse, physiotherapist, speech and language therapist, the portage team and a play specialist for Ezra’s older brother Stan, who all go to their house.
Ezra has monthly bloods taken and regular check-ups and fasts at Great Ormond Street, to see if he can eat less frequently than three-hourly.
Emily explained: “He is under two hospitals, Great Ormond Street and the Macgregor Ward, at Warwick, and has two dietitians, as he is on a special formula. He has two consultants and a team of amazing nurses, who are constantly on call if I need to phone them.”
She added: “This means as he grows and develops, we keep a very close eye as every low blood sugar reading brings a very real risk of brain injury. We still don’t know how or if this will have affected him.
“He is a happy little boy and we love him so much, but this is our daily reality and this is the case for all the other parents of children with HI.
“The odds of Congenital Hyperinsulinism are one in 50,000, so it’s pretty rare. If we can help fund new treatments with less side effects, or help prevent these very low blood sugars – a normal person will be between four and seven – this would change the lives of these children and their parents.”
For more information about the charity visit www.hyperinsulinism.co.uk