A Hove family has launched a £500,000 fundraiser to build the first prototype of a ventilator which could transform the life of their toddler.
Two-year-old Casper Oakley-Roberts has a rare breathing condition which requires manual ventilation whenever he is asleep and sometimes during the day.
The Oakley-Roberts family have been fundraising since setting up the charity Keep Me Breathing a year ago, to develop the ventilator, which they call a breathing pacemaker.
This would automate ventilation for people with Casper’s condition – Congenital Central Hypoventilation Syndrome (CCHS) – patients based on the same kind of sensor used in diabetes patches.
But with Casper’s family having invested their life savings into the project, the charity is asking for community’s help to fund the development of the initial prototype.
The charity hopes their Leap Year Ball next month will push them over the first £500,000 fundraising milestone to keep the work of the charity’s team of engineers and scientists in Cambridge going.
Casper’s father James said: “We are forever grateful for the medical support we receive but we want Casper and all children with CCHS to live without artificial life support.
“A cardiac pacemaker already exists and there is a wealth of technology that we are harnessing to make the breathing pacemaker a reality.
“We won’t rest until our mission is complete and we can help thousands of families around the world struggling with this devastating condition – and with your help we can.”
Having now finished chemotherapy for a set of brain tumours, Casper is walking and attending nursery, with a trained carer to help him.
To be useful as a potential treatment for every CCHS patient, each element of the breathing pacemaker prototype needs individual testing to make sure the materials will last well in the body and be effective, eventually fitting together like a jigsaw.
The £500,000 funding milestone is to be used to continue the development of the breathing pacemaker and fund research by the charity’s scientific advisory board of over 120 world-renowned experts in genetics, respiratory disease, intensive care, and paediatrics.
Alongside the gala ball at Findon Place on Saturday 27 April, the charity has 45 runners raising money in the Brighton marathon and 10K events, including James.
Tickets for the gala ball can be found here
Interesting, so the concept is that of a respiratory pacemaker?