With the festive season just over a month away, one dad is reminded of the horrifying moment his daughter suffered a seizure and now may not survive to see another Christmas.
Shane Torr, 32, from Derbyshire, was looking forward to having turkey and trimmings with his family in 2020, when suddenly his then three-month-old baby, Iris-Rose, had to be rushed to hospital.
The dad and his fiancé, Karen Conaghan, 39, who works as an NHS medical secretary, were left shocked after hearing their little girls’ earth-shattering diagnosis.
Doctors told the parents their baby, born just months earlier on 25 September 2022, has WWOX Syndrome – a neurodevelopmental disorder with no cure and causes premature death.
“We were in the living room just about to open presents with the kids when she seized in our arms,” Shane, now working as a full-time carer for Iris-Rose, told Jam Press.
“Naturally we feared the worst and thought we were going to lose her and immediately called for an ambulance.
“Her eyes rolled into the back of her head, her tongue was twitching and her whole body was going into spasms.
“We were so scared, anxious, nervous and worried.”
Iris-Rose’s siblings, [not named for privacy reasons] aged 15 and 13, from Karen’s previous relationship, were also in the room at the time.
The little girl was taken to Royal Derby Hospital.
Once out of immediate danger and following the likelihood of being diagnosed with epilepsy, she was put on specific drugs to try to keep her seizures at bay and was also put on a special diet.
But this didn’t work and the seizures would return “in a more aggressive manner”.
The parents were also told that Iris could suffer from SUDEP, also known as sudden unexpected death in epilepsy, with an average life expectancy of four years in young children – leaving them heartbroken.
In April 2021, Iris-Rose had a seizure that shut down her body and the doctors decided to put her into an induced coma.
Shane said: “We were told she could need a lot of care when or if she wakes up.
“She may not be the little girl we had loved since birth and she may have further complications in time.
“We were in pure fear of our little fighter not waking up.
“We felt useless as parents, wanting to help but all we could do and did do was hold her hand.
“She eventually came out of the coma but knowing she only has an average life expectancy of four years, it has been a heartbreak for us every day since.
“We live the reality of losing her every day and we try and cherish every moment with her.”
Iris-Rose, who is now three, is developmentally delayed due to her condition.
Shane said: “She can’t walk, she has her own way of crawling thanks to some amazing physio sessions and hard work.
“She is also non-verbal but doesn’t have the development to learn an alternate method of communication so we rely on her facial expressions a lot, as well as smiles and toddler tantrums.
“And although she does take food and drink orally, we have to control the texture, like a puree normally given to 10-month-olds.”
Despite the challenges she has faced in her short life, Iris-Rose is described by her family as being a very happy child.
Shane said: “She has a bubbly personality and lights up the room with her contagious smile and giggles.
“She fights every day and is a true superhero.”
The family is currently raising money for equipment to help Iris-Rose live a comfortable and safe life – however long that may be.
Shane added: “We also hope to raise awareness for the condition so parents and children alike can be given a diagnosis in a quicker timeframe.
“Time is crucial when seizures are occurring, as they can cause of so much damage to the brain.
“Early diagnosis of what causes them is vital to get the correct treatment.
“No one knows their own child better than a parent themselves.
“If you feel something isn’t right, don’t be afraid to ask for a second opinion, trust your gut and most importantly don’t be afraid to fight for what you think is the right treatment for your child.”
