Miracle baby suffering from fatal sleep disorder defied the odds to celebrate her sixth birthday
A baby girl who was born with condition that could kill her as she slept has defied the odds and made it to her sixth birthday.
Little Jovie Wyse was born prematurely back in May 2011 and was diagnosed with congenital central hypoventilation syndrome (CCHS), also known as Ondine’s curse, meaning that her body doesn’t breathe automatically when she is asleep.
However, having to undergo surgery at just two-months old to have a tracheotomy and having to be on a special ventilator for 21 hours a day she is now thriving and attending a mainstream school, only having to use a ventilator at night.
Parents, Lorna and Chris Wyse, both 32, from Worcester, have described their little girl as a confident, chatty girl who has never let her condition stop her.
Lorna, a makeup artist, said: “We were so lucky we had the diagnoses while she was still in the hospital, if she had fallen asleep at home it could have been fatal.
“We had never heard of the condition before until the doctors mentioned it, but when she was diagnosed it was a relief after two months of waiting.
“When you know what is wrong you can deal with the outcome.
“She copes with her condition so well, you would never think there was anything wrong.
“Her condition doesn’t affect her as much as she has got older, her body doesn’t tell her to stop so she gets tired, causing her to faint, so we keep an eye on her.
“She’s never embarrassed and she’s very confident.
“She’ll talk to anyone because she has spent so much of her time talking to doctors over the years.
As a baby Jovie was born prematurely and her parents thought she was late developing in her breathing, however, it soon became apparent that things weren’t right and doctors at Birmingham Children’s Hospital began months of tests to find the cause of her breathing problems.
But it was one surgeon who recognised Jovie‘s symptoms after being involved in a similar case in another baby and this lead to her diagnoses.
Lorna said: “It was very frightening when she was younger because she slept more and would have naps throughout the day.
“Most parents probably love to see their little ones nod off in the middle of the day – but for us, it was scary.”
The condition is so rare that there were only around 300 cases diagnosed worldwide when Jovie was born.
She underwent surgery to have a tracheotomy and was kept on a ventilator for 24 hours a day as her parents watched in fear she might not take another breath.
Eventually, she was allowed off the ventilator for short periods of time and allowed to go home but has gone from strength to strength and now only relies on a ventilator when she sleeps at night.
Her tracheotomy was removed at four-years-old, meaning her parents no longer check her breathing equipment every hour to stop blockages.
Lorna said: “She doesn’t know any different, the mask is part of her life.
“She knows she can never fall asleep without it.
“She is always aware, in case she gets tired and wants to fall asleep but she tells us straight away, she wouldn’t go without it.”
The plucky youngster is not letting her condition stop her living life to the full and enjoys playing football and is a keen cricket player, following in her father footsteps.
Lorna said: “She loves being outdoors and she’s a bit of a tomboy.
“She is very sporty but it can make her tired and her body doesn’t always let her know she is tired.
“If she doesn’t take a break it can cause her to faint occasionally.
“The condition is so rare that sometimes we still don’t know whats going to happen or what all the symptoms are.”
Jovie attends a mainstream school and doesn’t let her sleep disorder stop her being included in activities along with her classmates.
Lorna said: “She was so excited to start school.
“She takes part in PE lessons at school even though she might need to sit down now and again.
“Her dad plays for a cricket team in Bristol and got Jovie into it playing, she took part in the all stars cricket programme over the Summer and she loved it.”
Jovie still remains under supervision from doctors at Birmingham Children’s hospital and has regular check ups as well as taking part in a sleep study every year to check that her ventilator is matching her needs correctly.
Lorna said: “I feel less anxious than I did before but you are never going to not worried.
“We have had to deal with new symptoms starting because of the condition being so rare, such as her feeling sick or fainting, but we have built our confidence now.”
“She never lets the disorder get in her way and she’s never been scared to try new things.
Do you, or someone you know, have a similar story to tell? Get in touch today to earn £££ and raise awareness.