When Kayleigh Roberts’ daughter Jessica-Faith was born in September 2009, six weeks early and weighing just 4lbs 13oz, she contracted necrotising enterocolitis (NEC), a devastating bowel disorder that mainly strikes premature babies.
About three per cent of newborn babies in neonatal units develop the disorder but up to 35 per cent of these babies die and survivors often develop long-term health problems.
The disease typically strikes without warning and, by the time it is diagnosed, babies are often already extremely ill.
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Kayleigh, of Irchester, said: "They couldn’t save her. I was taken aside to the family room and got told the words no mother should ever hear: ‘We can’t do any more and need to switch the monitors off’. I was distraught and got all the screaming and tears I needed out for two hours. I did not cry again. My little girl went to the angels at 1.20pm on 17 September, 2009.
"I fell asleep with her and wished and prayed I wouldn’t wake up. I did and just could not believe this had happened to me.
"At the time you feel like the only one. This didn’t occur to me until I walked around the graveyard and saw the others."
Action Medical Research is funding a study to design a new sensor which could allow screening of premature babies for NEC to become routine – for the first time ever. The researchers believe the new sensor could allow much earlier diagnosis of NEC, so that babies with the disease can be identified and treated sooner, before they become seriously ill.
Kayleigh will be undertaking a skydive on Saturday, July 23, to raise funds for both charities.
She said: "I would love to raise awareness of necrotising enterocolitis and help others leave the hospitals with healthy babies.
"I believe that, if frequent blood tests were taken, or there was research for a new test that can be done to prevent this for premature infants, maybe at an earlier stage, then more mothers would be able to take their babies home.”
She will also be hosting a ball at Kettering Park Hotel and Spa on Saturday, November 19, with her partner Robert Jones in aid of Action Medical Research to help fund research to save and change children’s lives in the future.
For more than 60 years Action Medical Research has helped pioneer treatments and ways to prevent disease that have benefited millions of people in the UK and across the world. Research they’ve funded has helped to beat polio in the UK, develop ultrasound in pregnancy, fight meningitis and prevent stillbirths.
Action Medical Research is currently funding research into meningitis, Down syndrome, epilepsy and premature birth, as well as some rare and distressing conditions that severely affect children.
To support Kayleigh’s fundraising for her skydive and to read more of her story, please visit action.org.uk/sponsor/jessicafaith
Kayleigh and Robert are keen to hear from anyone who would like to donate raffle prizes or offer sponsorship for the ball in November in memory of Jessica-Faith – please call Kayleigh on 07960 860658 if you can help. To buy tickets for this special event in aid of Action Medical Research, visit action.org.uk/jessica-faith