A two-year-old girl's rare genetic condition means she is unlikely to live beyond the age of four.
Iris-Rose Torr was only three months old when she suffered her first seizure. On Christmas Day in 2020, she was admitted to hospital and was in and out over the following weeks.
Soon after, she got her first diagnosis of epilepsy and was placed on a programme of medication in order to deal with future seizures.
Iris-Rose's dad Shane Torr, 31, told the ECHO: "She would have two weeks where she was stable and then have a week of seizures and followed this pattern for a few months. Her seizures were anything from 30 seconds an hour long.
"She would stop breathing a lot during her seizures and so an ambulance would be called."
An electrocardiogram (ECG) resulted in Iris-Rose being diagnosed with infantile spasms. Shane and Iris-Rose's mum Karen Conaghan, 38, were also told their daughter was at high risk of SUDEP - Sudden Unexpected Death in Epilepsy.
Matters did not get any better. After another seizure, Iris-Rose spent a long time in intensive care in the Midlands, where the family are from.
Shane said: "She had a normal seizure that would put her in hospital for a week. But at Derby hospital they didn't have an intensive care unit for children - they just had a high-dependency unit where they would have one nurse per child to sit with them.
"She had the seizure that she would normally have. The emergency medicines that she has didn't touch it this time around.
"Her body was going into shock, she was struggling with everything. The doctor said she needed to go into a coma. When her body could shut down and not have to work at all.
"She was transported to Leicester. By the time we'd got there, she had come around a bit and stopped the seizures. Some medicine worked eventually.
"We stayed in Leicester for two nights just to make sure she didn't need to go into intensive care there.
"She had two nights on the border of intensive care in Leicester, then they said she was well enough to step down but she needed to go to Nottingham in case she needed intensive care at their facility.
"We transported her to Nottingham and then it was straight into intensive care because she did the same thing again. We were told that she may not wake up.
"If she did, we don't know what state it would be in. It could have been brain damage, it could have been anything. It was the longest week of our life."
Iris-Rose was able to return home. However, the period of April to May 2021 saw her worst episodes of seizures and spasms - they became more frequent and lasted longer.
Shane and Karen wanted a genetic blood panel test to look into the causes of their daughter's epilepsy. After a drawn-out process, in June they found out she has a very rare genetic condition called WOREE Syndrome.
It has a severe impact on brain development and most children with the syndrome will not live to adulthood, with an average life expectancy said to be four years. There is no cure at present.
Iris-Rose's parents said they have still not processed the diagnosis, saying it had shattered all hope they had. Additionally, they found it hard breaking the news to Calum, 14, and Charlotte, 12, who are Karen's children from a previous relationship.
Shane said: "We always wanted to tell the children but every time we sat down to do it, we couldn't physically. We broke down every time we tried to tell them.
"Eventually we told them, once we had shared our story online, in case they heard it from somebody at school.
"We told them about five weeks ago and they've been brilliant with her, they've understood that her seizures are what makes her different and why she's a little bit slow to react to things.
"Calum doesn't want to leave her side. Before he was wanting to play on his Xbox and talk to his friends, but for the last month he's not wanted to leave her side. He's wanted to watch TV with her and play with her and not really leave her."
Though the prognosis is not good and Iris-Rose's condition limits what the family can do, Shane and the family are determined to give her the best experiences they can. Describing Iris-Rose as a fighter, Shane said he wanted to make as many memories and give his daughter as normal life as possible.
The family live in Derby, but Shane is a Liverpool FC fan as he has family from the city. He and Karen have taken Iris-Rose to Anfield and look to come to Liverpool as often as possible.
He said: "Iris-Rose has been to Anfield. We did a stadium tour and we managed to get tickets for a pre-season friendly a couple of years ago. We took Iris-Rose, she absolutely loved the atmosphere. She had to wear ear muffs but she knows what she wants.
She's non-verbal, she'll babble, she'll scream in excitement or she'll throw a little tantrum like any toddler would do. That's how we know her mood. But she was just smiling and laughing the whole time she was there, giving off little grins and telling us in her own way that she loved it."
The family have launched a GoFundMe in order to support them and provide Iris-Rose with the equipment that she needs.
Shane said: "We're asking for the equipment that makes her comfortable. We are lucky that we get so much through the NHS but there's also so much that the NHS can't provide. Because it's classed as a sensory item or a disability item, the prices just skyrocket. At the moment, we're looking at nearly £3,500 for a car seat that will give her the correct posture and makes her comfortable.
"We've eaten up so much of our own money trying to support her, but the bigger she's got, she's outgrowing things and we're having to do it all over again. It's a weight on our shoulders and stress - we never thought we would be in this position to have to ask for help. I wouldn't wish it on anyone.
"It's for Iris-Rose, we've had to swallow our pride and ask for help. Any parent would do.
"We've got great support around us. We'd like to thank family and friends, especially nan and grandad who do so much for us."
You can view the GoFundMe by clicking here.
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