A couple are fighting to find a treatment for their son who requires life support whenever he goes to sleep.
Casper Oakley-Roberts was born with congenital central hypoventilation syndrome (CCHS), a rare genetic condition, which means that he loses control of his breathing and requires mechanical ventilation when he falls asleep.
The 14-month-old, from Hove, currently needs constant overnight care, but his parents are hoping to help create a game-changing “breathing pacemaker” which would drastically improve his quality of life.
Stephanie Roberts, 33, Casper’s mother, said: “Casper is literally the happiest child in the world. Nurses spoke about not knowing what milestones he would reach but now he is crawling and babbling away.
“His diagnosis was a tough pill to swallow. CCHS isn’t something that you grow out of, and there wasn’t much investment in a better outcome.
“The pacemaker really would make a huge difference. In a good scenario we have a five-year goal for this being in place.”
Casper was born in Worthing Hospital in December 2021 and appeared fine for the first few hours of his life but later suffered respiratory distress.
He was transferred to the Trevor Mann Baby Unit in Brighton before moving to the Royal Alexandra Children’s Hospital.
Casper was diagnosed with CCHS, this means Casper’s body does not prioritise breathing, which will also affect his day-to-day life such as doing heavy exercise.
Less than 2,000 people in the world suffer from the condition.
Stephanie and her partner James Oakley, also 33, were told that Casper also suffered from neuroblastoma, a form of cancer.
To support their son and others suffering from the condition, Stephanie and James created Keep Me Breathing, a charity aiming to develop a treatment for CCHS.
After bringing together a leading medical board of experts and working with Cambridge University the couple are hopeful that a “breathing pacemaker” could be ready within the next five years.
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Dad James said: “The simplest way to think about it is that it works similar to a regular pacemaker to make you breath.
“When you don’t breathe hard enough it will stimulate a nerve which contracts your diaphragm.
“With this Casper could go to school without a nurse looking after him and stay over at a friend’s house. The day-to-day improvements would almost be as big as the night time ones.”
So far Stephanie and James, who also have a three-year-old son, Max, say that they have invested their life savings in the treatment for Casper.
A prototype for the breathing pacemaker could be made in the near future.
The couple are now looking to raise funds to continue with the creation of the pacemaker, which could be ready for use in treatment plans by 2028.
Keep Me Breathing are holding a Yoga fundraiser at The Grand Hotel in Brighton on Saturday, February 18.
The charity also has people running the Brighton Marathon and 10k in April.
Donations to the charity can be made at https://keepmebreathing.com/contribute/.
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