A Milton Keynes mum is volunteering her baby girl for an NHS trial to prevent her from getting type 1 diabetes like her older sister.
Chloe Phippard’s five-month-old daughter Ava will take daily doses of insulin powder to see if it will stop her developing diabetes.
A linked study has already found Ava had a genetic risk of the disease.
Chloe, whose older daughter Amelia was diagnosed in 2015 at the age of two, said: “I cried when I found out about the risk because I knew what Amelia had gone through. I didn’t want Ava to go through that as well. I will do anything to prevent Ava from being diagnosed and doing the trial means I could give her a chance at living a normal life.”
Chloe, 24, is speaking out on International Clinical Trials Day today (Monday).
An annual drive to encourage the public to take part in health research, it will be marked by a public information event at the entrance of Milton Keynes University Hospital from 10am to 3pm tomorrow, May 21.
Type 1 diabetes is a long-term condition where the body stops producing insulin, causing glucose levels in the blood to become too high. This can be life threatening and even with treatment can cause serious long-term health problems such as blindness, cardiovascular disease and stroke.
Neither Chloe nor husband Carl have any previous cases of diabetes in their families and were shocked when Amelia was diagnosed.
She needs doses of insulin through a portable device worn on a belt which delivers it through a tube placed under the skin. She also uses another device to alert her parents to when her blood sugar levels are low.
“She’ll get really grumpy at you, she’ll get tired, she gets slurred speech sometimes. You can just see it in her face and her eyes and you know instantly that her levels have dropped,” said Chloe, who also has a one-year-old daughter called Alice.
She added: “Amelia can’t go to birthday parties or around a friend’s house for dinner without me or her dad there because someone has to be trained in how to give her insulin. There’s just certain things that she can’t really do that other kids do and wouldn’t even think anything of.
“Sometimes she’ll ask me if she’ll have to have insulin when she’s older and I have to say yes, you’ll be having it forever. She’s never going to live a life without diabetes and it’s all she’s ever known.”
Chloe learned of the INvestigating Genetic Risk for type 1 Diabetes (INGR1D) study at Milton Keynes University Hospital last August, when she was five months pregnant.
When Ava was born in December, a sample of her blood - which is already collected from newborns for screening tests - was analysed for genetic risk of type 1 diabetes, with her mother’s consent.
About one percent of children will have genes which put them at a high risk (greater than 10 percent) of developing type 1 diabetes. After the test revealed Ava had these genes, Chloe was invited to take part in the Primary Oral Insulin Trial (POInT trial) to see if daily doses of insulin powder couyld prevent it developing.
Participants on the trial are given insulin powder or a placebo (dummy drug), to compare the two. Neither the researchers nor participants are told which they will receive, to prevent bias. Parents are asked to give their children the powder until they are three. They will have visits from the research team for six years to monitor the child’s health.
It is hoped that the insulin can train the immune system to tolerate the body’s own insulin to prevent the onset of type 1 diabetes. There is currently no way to prevent the disease. Ava will begin taking the powder in her food once she is old enough to eat pureed foods.
Chloe, who works as a healthcare assistant at the hospital, said: “If I can prevent another child from getting type 1 diabetes, that would be amazing. If the trial works then that’s great because no other kid or parent will have to go through what we went through. I wouldn’t wish this on anyone.
“Even if it turns out Ava got the placebo, I feel it’s better than not doing anything at all. Knowing that someone will be around regularly just to check on her just put my mind at ease.”
The study team at Milton Keynes University Hospital, led by consultant Ms Premila Thampi and research midwives Edel Clare and Joanna Mead, hope to screen 30,000 babies born in Berkshire, Buckinghamshire, Oxfordshire and Milton Keynes by 2021, and to enrol 100 babies at increased risk of type 1 diabetes for the POINT study.
The studies are part of the Global Platform for the Prevention of Autoimmune Diabetes (GPPAD),
Professor Matthew Snape, the study’s chief investigator, said: “It’s very exciting to be involved in a project that is looking to prevent type 1 diabetes, and we are enormously grateful to families such as the Phippards for their willingness to take part.”
For more information visit www.ingr1d.org.uk or contact firstname.lastname@example.org / 01865 221 107