A two-year-old from Rugby who was born unable to breathe but was saved by a pioneering treatment in which his brain was cooled is featuring in a charity campaign to fund research into more treatments.
When Ethan Boffin was born after a long labour, he was blue, lifeless, and unable to breathe.
He was taken for emergency resuscitation and cared for in the neonatal intensive care unit at University Hospitals Coventry and Warwickshire.
He had a seizure and showed signs of oxygen deprivation, and his parents were told about a cooling technique which was developed to prevent brain damage to babies starved of oxygen at birth.
The cooling technique works by reducing the temperature of the brain cells, which slows down chemical reactions and gives the cells a chance to repair themselves before permanent damage is done.
Ethan's father Chris Boffin said: “When Ethan was born there were moments my wife Reah and I didn’t think we’d ever be able to take him home, and it was the worst period of our lives by far.
"We didn’t know if the cooling treatment would work, but after he’d had it and they started raising his temperature back to normal, he became so much more alert and even pulled out his own ventilation tube! After 10 days, when his tests and MRI scans came back clear, we took Ethan home.
“He’s a real little character, a typical naughty toddler! He loves cars, and ice cream, and he’s doing really well and meeting all his developmental milestones which is fantastic."
Charity Sparks helped to fund the research which lead to the cooling treatment being developed, and that inspired Ethan’s family to support Sparks’ new campaign, Sparks - No Time To Lose, which has launched with a hard-hitting awareness film featuring Ethan and four other children affected by rare and complex conditions.
The campaign spreads the message that one in three children with a rare disease will not live to celebrate their fifth birthday.
And Sparks is aiming to inspire people to find out more about the charity and how it supports vital child health research, and encourage them to donate.
Mr Boffin said: “We’re so very thankful to Sparks, and I’ve since taken part in Ride London alongside my dad to raise money for them.
"Watching Ethan struggle in hospital was an absolutely horrible time, and after everything we’ve been through we know just how important it is to fund research that helps save babies’ lives.”
Kiki Syrad, director of Grants and Impact at Sparks charity said: “Child health research is severely underfunded, with just 5 per cent of what the public and charities spend on research, funding dedicated medical research for children.
"That’s why we have launched our new campaign, to help us raise the vital funds we need to support more child health research projects across the UK. #
"We need to find new treatments that these children and their families urgently need; for critically ill children there’s no time to lose.
To help Sparks raise £10 million to find the treatments they urgently need, visit www.sparks.org.uk